#1875 Freak Out in Bay 3

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1875: Freak Out in Bay 3

Host: Scott Benner
Guest: Sam (Ashley Salea)
Date: June 12, 2026

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Episode Overview

In this episode, Scott Benner hosts Sam (real name: Ashley Salea), the mother of a boy diagnosed with neonatal diabetes caused by a rare KCNJ11 gene mutation. Diagnosed just eight hours after birth, Sam shares her deeply personal and often harrowing journey—from a complicated pregnancy and trauma-filled NICU stay, to learning her son’s unique diagnosis, fighting for answers, and managing his diabetes today. Their conversation balances medical detail with raw emotion and practical advice, offering insight, empathy, and resilience for families navigating rare forms of diabetes.

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Key Discussion Points and Insights

1. Pregnancy & Birth Complications (04:00-08:00)

• Sam’s pregnancy was typical until about 32 weeks, when complications like a partial placental detachment surfaced and the baby's growth stalled.
• Induction was planned calmly, but labor escalated quickly; delivery was rapid and somewhat chaotic.
• Notable: Sam’s young age (20) and lack of medical background intensified her anxiety as a first-time mom.

Quote:
"I just want a hot bath, and I just want to feel better. And next thing I know, five pushes and he's here. I was just dumbfounded."
—Sam (07:32)

2. Immediate Signs of Diabetes & Emergency Transfer (09:00-12:00)

• Baby’s glucose readings were abnormally high within hours of birth; staff kept Sam calm but were urgently investigating.
• The baby was transferred from a regional hospital to the University of Iowa’s research hospital for specialized care.

Quote:
"They were continuously checking his glucose because it wasn’t where a normal child at that age should be."
—Sam (09:54)

• Sam nearly wasn’t allowed to accompany her son due to her own health issues post-delivery, but her doctor advocated for her transfer too.

3. NICU Challenges—Medical Equipment and Emotional Toll (16:13-19:59)

• The newborn needed an arterial line, multiple tubes, and was receiving insulin shots on a sliding scale.
• Sam describes feelings of being overwhelmed, uninformed, and powerless—relying on medical staff for information as a very young, unprepared mother.
• Notable: The nurse’s compassion when realizing the impact of “one more tube” on the parents, not just the patient.

Quote:
"Just because sometimes as doctors and nurses, we forget that something so minor…is actually a big deal to the parents."
—A nurse (19:36, as related by Sam)

• Sam's panic and emotional breakdowns were frequent amid her son's fragile condition and unclear prognosis.

4. Genetic Testing Battles & Systemic Communication Gaps (22:41-27:02)

• Diagnosis required advanced (and expensive) genetic testing: a $12,000 test for each family member, not covered by insurance.
• Sam researched alternatives, discovering the UK would process it for free if they paid for shipping, but the hospital refused due to contamination risks.
• Without clear communication, the hospital performed the test anyway—causing another “freak out” for Sam over assumed future costs.

Quote:
"A nurse comes in with a needle… six and a half inches long, longer than the baby’s arm. …That’s when they explained they were doing the genetic lab behind our back"
—Sam (25:01)

• The University eventually absorbed the cost, but the lack of transparency deeply damaged trust.

5. Mama Bear Moment: Advocacy Turning Point (31:16-31:51)

• Social services mistook Sam’s justified breakdowns for postpartum depression.
• Sam asserted her role as her child’s advocate, explaining the accumulation of traumatic events.

Quote:
"I am my child’s voice. He doesn’t have a voice. …Somebody’s got to speak up for him, and that will be me."
—Sam (31:25)

6. Rare Diagnosis—Understanding KCNJ11 Mutation (33:11-37:52)

• Eventually diagnosed with neonatal diabetes due to a KCNJ11 gene mutation: 1 in 600,000 births.
• Mutation means the KATP channel in pancreatic beta cells malfunctions; in Sam’s son’s case, he produces too little insulin.
• Many other kids with the same mutation have additional health issues, but her son’s case is isolated to diabetes.

Quote:
"I got that kid—all by myself."
—Sam (36:04)

7. Home Management: From Insulin to Oral Medication (40:41-46:38)

• Early months involved near-constant blood sugar checks, insulin injections, and feeding management (sometimes every 2 hours).
• At 17-18 months, he became one of the youngest to be approved for a Dexcom continuous glucose monitor (CGM).
• By age 2, transitioned to glyburide—a sulfonylurea oral medication that targets the specific potassium channel. Now only occasional insulin is needed.

Quote:
"By the time he turned 2, we found out that we would be able to switch him to an oral medication called glyburide… No insulin. He only gets insulin if he’s above 300 for three hours or more."
—Sam (42:56)

8. How Glyburide Works: A Mini Lesson (47:13-48:55)

• Scott provides a detailed (but accessible) breakdown of how glyburide “bypasses the broken glucose sensing step and directly pushes the beta cell toward insulin release.”
• For this specific mutation, the oral drug allows near-normal glucose regulation by pharmacologically forcing the channel to close, triggering insulin secretion.

Quote:
"Normally…when glucose rises… insulin is secreted. But with this mutation, the channel stays open… So glyburide binds and forces it closed. Once the channel closes… insulin can be released again."
—Scott (47:13)

9. Genetic Implications & Family Planning (49:12-50:41)

• Doctors explained one or both parents likely carry the mutation, but it’s dormant in them.
• This uncertainty influenced Sam’s decision not to have more children—but co-parent’s new child did not inherit the condition.

10. Resilience Forged from a Traumatic Upbringing (37:57-40:35 & 52:49-63:56)

• Sam shares her difficult childhood: multiple moves, abuse, parental instability, periods of homelessness, and family violence.
• The intensity of her upbringing fostered both grit and a desire to break generational trauma.
• Therapy—especially post-relationship separation—helped her process and heal, motivating her to parent differently.

Quote:
"I wanted to be a better person… It’s not about me. I have to be strong for my child. He’s looking up to me all hours of the day."
—Sam (38:33)

11. Healthy, Innovative Co-Parenting (51:16-66:26)

• Despite separating from her son’s father, Sam and her ex maintain a supportive, collaborative co-parenting relationship, sharing holidays and important events.
• Scott notes their dynamic as unusually healthy, likely forged by shared adversity and a mutual desire to break the patterns of their own upbringings.

Quote:
"Why is it weird [to have a good co-parenting relationship]? Is it because society tells us it’s weird? If he doesn't go, or I don't go, then we're missing out on an experience with our child."
—Sam (63:59)

12. Looking Ahead: Self-Growth and Hope (66:36-68:50)

• Sam is currently in a new relationship, has prioritized therapy and personal growth, and is proud of breaking generational patterns.
• She hopes her story helps others and that her son feels supported and inspired.

Quote:
"I'm all about breaking all the generational curses that I can."
—Sam (63:53)

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Memorable Quotes & Segment Timestamps

• Sam: "Five pushes and he's here. I was just dumbfounded." (07:32)
• Sam: "I freaked out again. Another freak out episode." (25:35)
• Sam: "I am my child's voice... Somebody’s got to speak up for him, and that will be me." (31:25)
• Scott: "The same group of people who weren’t concerned about the muddy boots, were concerned about contamination. That’s interesting, right?" (26:30)
• Sam: "I just decided I wanted to be a better person in life than what I was given and handed." (38:33)
• Scott: (on glyburide) "The drug acts because it pharmacologically closes the channel; the cell can depolarize, calcium can enter, and insulin can be released." (47:13)
• Sam: "He is the only the fourth patient ever in Iowa to be diagnosed with what he has. He was diagnosed eight hours after he’s born." (42:10)
• Sam: "I want to be the best role model I can be for him because I didn’t have that." (39:27)
• Sam: "I'd be more than happy to look into it further and provide you…more answers if you have any questions." (68:00)

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Overall Tone & Takeaways

This episode is heartfelt, honest, sometimes raw but always hopeful. Scott and Sam blend dark humor with empathy while covering rare medical territory. Sam’s ability to advocate for her son, make informed choices despite emotional exhaustion, and strive for generational change stands out as a model for families facing rare or overwhelming diagnoses.

Key Takeaways for Listeners:

• Advocacy and persistence are crucial when navigating complex pediatric diagnoses and fragmented medical systems.
• Even the most traumatic beginnings can be reshaped through therapy, self-reflection, and community.
• Neonatal diabetes caused by gene mutations is rare, but new therapies (like glyburide) can dramatically improve quality of life.
• Open conversations about rare conditions—without shame—advance public awareness and empower others.

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For more on neonatal diabetes, rare gene mutations, and advocacy, visit juiceboxpodcast.com or explore the Bold Beginnings series mentioned at the start of the episode.

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Notable Segments by Timestamp

| Segment | Timestamp | |-----------------------------------------------|-------------| | Pregnancy complications & fast delivery | 04:00-08:00 | | Onset of neonatal diabetes & transfer | 09:00-12:04 | | NICU trauma and insulin management | 16:13-19:54 | | Genetic testing roadblocks and cost | 22:41-27:02 | | Advocacy and “freak out in bay 3” | 25:35-31:16 | | How glyburide works; impact of mutation | 44:32-48:55 | | Sam’s resilience & breaking cycles | 37:57-40:35 | | Healthy co-parenting after trauma | 51:16-66:26 |

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This episode is a must-listen for parents facing rare diabetes diagnoses, medical professionals seeking patient perspectives, and anyone interested in the intersection of genetics, resilience, and advocacy.

Transcript

[Scott]

Here we are, back together again, friends, for another episode of the Juice Box Podcast.

[Sam]

I am Sam. My government name is actually Solea. I am the mother of a neonatal diabetic with a KCNJ11 gene mutation. He was diagnosed eight hours after he was born.

[Scott]

If you or a loved one is newly diagnosed with type 1 diabetes and you're seeking a clear, practical perspective, check out the Bold Beginning series on the Juice Box Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type 1. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate Life with Type 1. You can start your journey informed and empowered with the Juice Box Podcast. The Bold Beginning Series and all of the collections in the Juice Box Podcast are available in your audio app [e-mail] in the menu. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom G7, the same CGM that my daughter wears. You can learn more and get started today at my link dexcom.com juicebox Today's episode is also sponsored by the Omnipod 5. And at my link omnipod.com juicebox you can get yourself a free. Free. What'd I just say? A free Omnipod 5 starter kit. Free. Get out of here. Go click on that link omnipod.com juicebox check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox links in the show notes [e-mail] the podcast is also sponsored today by Cozy Earth. You can use my offer code juicebox at checkout to save 20% off of your entire order@cozy earth.com everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available@cozy earth.com just use the offer code Juice Box at checkout.

[Sam]

I am Sam. My government name is Ashley Salea. I am the mother of a neonatal diabetic with a KCNJ11 gene mutation. He was diagnosed eight hours after he was born.

[Scott]

Wow. Am I calling you Sam?

[Sam]

Yes.

[Scott]

Okay. Please, please.

[Sam]

It's just easier for everybody to call me Sam.

[Scott]

I Have no trouble with it. I just wanted to make sure I didn't start calling you something else. Well, how old are you?

[Sam]

I am. Oh, 30. 30.

[Scott]

Sam, why don't you know how old you are?

[Sam]

Well, when you turn. After you turn 25, you just kind of forget.

[Scott]

Oh, is that what you do? Yeah, I should try that. So you're 30 years old. You have how many kids?

[Sam]

One.

[Scott]

One. And how old is the baby?

[Sam]

He is now 10 and a half.

[Scott]

10 and a half. Okay, so take me back. Your pregnancy, pretty. Was it like a common pregnancy? Did it seem like it was problematic? How was that process?

[Sam]

So it was actually really great up until it wasn't. About 32ish weeks along, we noticed some problems. Such as, like, the placenta starting to detach. He just wasn't growing. He really didn't have the room to grow because I'm a very small person also. And then things just kind of escalated from there. And about 35 weeks, my doctor had made a comment stating that he wanted me to deliver. At the time, we were located in Iowa. He wanted us to deliver in the University of Iowa. He never really made it seem like anything was, like, drastic. So I was like, no, like, it's okay. Like, I picked you. I want you for a reason. I'm a very, so to speak, shy female. I don't want everybody up in there and everything. So I was dead set that he was going to do it. He never made me feel like things were going to take a turn for the worse.

[Scott]

Okay.

[Sam]

He was very calm about everything. And looking back now, I realize it was actually, like, more serious than he ever led me to believe. And I think it was more him just trying to keep me calm because we were in, like, the. In between. We. It could go either direction.

[Scott]

I say. No reason to get you upset in that moment.

[Sam]

Yes. And then about 35 weeks, he was like, okay, I'm gonna give it a couple more days. If we don't see any progress, then we're gonna go ahead and induce you. And sure enough, we started the induction process.

[Scott]

Oh, my. And then, I'm sorry, you married at that time?

[Sam]

So my spouse and I at that time, my son's father, we were never actually married, but we were common law married at the time.

[Scott]

You. You weren't by yourself in the hospital is what I'm getting at.

[Sam]

Correct.

[Scott]

Okay, good, good. And so the induction, they give you the juice to get it going, right? Is that the whole thing?

[Sam]

Yeah.

[Scott]

Making a. Make a plan, show up on a certain day. It wasn't rushed or emergent or anything like that.

[Sam]

Nope. We show. They said, be here midnight on Friday. I think it was like, the 27th of August. And we're like, okay. So we got there. It was my mom and I, because we had a new puppy at the time. So his dad stayed at home. The next morning, he was up there and everything. So this would actually been later on. And dirt on Friday. And they started some type of pill they gave me, and they started all their stuff, and they're like, okay, you're going to be here for, like, 36 hours. And some labors last up to 72, especially with it being your first one. And I'm like, oh, my. Okay. And then, yeah, like, this sounds like a great time. And then all of a sudden, I mean, several hours later, they wanted me up and walking as much as possible to try and speed up the process. And all I wanted to do was take a bath.

[Scott]

Yeah.

[Sam]

And I was like, okay, it's time for my bath. Like he said, I get up. I get up every hour for a half hour. It's time. And she's like, let's just go ahead and see how far along you're coming. She's like, when you hit a six, you cannot. Because if your water breaks, like, you cannot be in the bathtub without water. Like, okay, but I promise you, I'm nowhere near a six. And she's like, oh, you're at a six, seven. So you're not taking a bath. And we're calling the doctor.

[Scott]

It's your last moment.

[Sam]

Yeah. And I was so mad in that moment. I was like, I just want a hot bath, and I just want to feel better. And so they called the anesthesiologist up. He never made it. They called my doctor in, and they're like, you're gonna have to hurry up, because she's an actual of labor. And he's like, there's no reason that she should be. And she's like, they. They're like, no, she absolutely is. He got there, and I. I kid you not. I pushed five times, and he was still in his farm clothes. And I had my son.

[Scott]

Did he have a corn cob in his pocket by any chance?

[Sam]

No, but he did have mud on his boobs.

[Scott]

Oh, my gosh. That's. I don't know if that's amazing or creepy. I can't tell.

[Sam]

Um.

[Scott]

Okay.

[Sam]

He's like, I didn't even have time to blow my lab coat.

[Scott]

So baby comes. Is there initially any problems at all? Anything? Like, on that day to be concerned

[Sam]

about on that day. Yes. But, like, the first couple hours, like, brand new mom. I was 20. Yeah. 20 years old when I had my son.

[Scott]

Wow.

[Sam]

And they, like, threw him on my. Not really through him, but, like, put him on my chest. And I was like, what do I do? Like, I don't know what I'm supposed to do right now.

[Scott]

I'm still thinking that. In case you're. In case you're wondering, Sam, I'm. I'm. I'm pretty far into this. And every day I think I wonder what I'm supposed to do.

[Sam]

Yeah. Like, they do not give you an instruction meeting. And I, like, looked around at the nurses, like, dumb about it. Like, what just happened? Because, again, Everybody's telling me 72 hours and everything, and five pushes and he's here. And I was like, yeah. Like, I was just dumbfounded. So in the first, like, couple hours, I had opted for him to stay in the room with me because I wanted to start, like, caring for him and getting used to, like, the mom things. And they came in about an hour later and said, we're just gonna take him into the nursery just for some observation and get them cleaned up and stuff. And I was like, okay. Didn't think anything of it. Like, they were just calm and collected. They reassured me. Come to find out, behind the scenes, they were continuously checking his glucose because it wasn't where a normal child at that age should be.

[Scott]

Oh.

[Sam]

And then about. Oh, I couldn't even tell you what time it was. I want to say early afternoon. His pediatrician comes in, and she's saying, okay, so, like, we're noticing, and, of course, doctors, you know, use the big words and stuff. And I just went through this traumatizing life experience, and I was like, can you just dumb this down for me? Like, I cannot understand what you're saying. And she's like, so your son's glucose is higher than what we would want it to be. We're gonna have to transport him. And my mom's like. My mom and I were both like, okay, so what floor are we moving to? Yeah, just thinking we're going to a different level. And she's like, no, he has to go to Iowa City. I was like, what? And then from where we were, why there?

[Scott]

Is it because they have clean shoes? Why did you have to go to Iowa City? Did they have, like, a.

[Sam]

So the University of Iowa is a research hospital.

[Scott]

I see.

[Sam]

So they have. They were better equipped to care for just about, honestly, anything I've Never to. Best comparison I can think of with Iowa City is like, going to St. Louis.

[Scott]

Okay. And do you get to go with him, or do they keep you at that hospital?

[Sam]

So in a normal situation, no. If I had been. If I had been probably in a better condition than I was because my blood pressure tanked and everything else, they would not have discharged me. And in that moment, I actually found out that just because baby gets discharged to a different hospital doesn't mean that mom does. And I. I'll be honest, I freaked out on everybody finding that out. And my doctor actually agreed. As long as, like, I passed certain requirements, I was able to go. And he's like, with the complication that she's having or the complications she started having after giving birth and stuff, Iowa City is actually going to be the best place for her, too.

[Scott]

That was nice. It sounds like he made a decision to help you stay with the baby.

[Sam]

Yes.

[Scott]

Let me pause for a second there. So we'll put you guys in transport, and we'll hold on for a second. In your family, any issues like this in the past, do people have autoimmune issues? Are people sick in general? Like, what's the family health like?

[Sam]

So I do not. Two years after he was born, my mom has an autoimmune disease called Graves disease, but it has nothing to do with the pancreas. It deals with the thyroid.

[Scott]

Yep.

[Sam]

My, like, very distant ancestors have a history of type 2 diabetes, but nothing like, nothing else. And my cousin's son was actually diagnosed a year and a half ago with type. Type 1 diabetes.

[Scott]

Your cousin's son was. Okay.

[Sam]

And they're the same age.

[Scott]

Okay, okay. So. All right. So they get you to the hospital. Baby's blood sugar won't come down. It shouldn't be lost on people. Like, 20 is young to be dealing with all this, you know, so it's a lot happening. You know, you don't have a background in this. Does anybody in your family have, like, a. Even a medical background to help walk you through it, or you just sort of, you know, at the mercy of what people will tell you?

[Sam]

Yeah, I was 100% even, like, honestly, still to this day, I'm still at the mercy to what people tell me because it doesn't matter how much knowledge you have about diabetes. I personally believe anything and everything can change in a split second. And you can't have all the knowledge. There's always going to be something else that you. I feel like I'm learning something else every single day.

[Scott]

Yeah. And you're at it for 10 years now.

[Sam]

Yes.

[Scott]

Yeah. What is this gene mutation? And you know, when do they figure it out? And then how's it presented to you? And then what? What does that mean for his life? You know, in the beginning and now? Friends, I just placed my [e-mail] they're today's sponsor and I'm here to tell you about them. Use my offer code juicebox at checkout when you buy and you'll save 20% off of your entire order. That's everything in your cart at. @cozyearth.com, save 20% with the offer code juicebox now. Why am I excited? Well, I just ordered the cozy Earth blanket. It's the viscose bamboo blanket. I'm super excited about it. It looks comfy as can be and it's gonna go so well with the sheets that we already have from Cozy Earth now. Yeah, I'm a bit of a Cozy Earth convert, I guess. I'm sitting here in my joggers. I used my towels coming out of the shower this morning. I slept on my sheets last night. Slept like a baby. By the way, cozyearth.com they pretty much have everything you want. Use the offer code juicebox to save 20% at checkout on skin care, women's and men's clothing, bath and sleeping accessories. And don't forget, Valentine's Day is coming up quickly. Get those pajamas. Cozyearth.com use the offer code juicebox at checkout to save 20% off of your entire order. Today's episode is brought to you by Omnipod. Did you know that the majority of Omnipod 5 users pay less than $30 per month at the pharmacy. That's less than $1 a day for tube free automated insulin delivery. And a third of Omnipod 5 users pay $0 per month. You heard that right. Zero. That's less than your daily coffee. For all of the benefits of tubeless, waterproof automated insulin delivery, my daughter has been wearing an Omnipod every day since she was 4 years old and she's about to be 21. My family relies on Omnipod and I think you'll love it. And you can try it for free right now by requesting your free starter kit today at my link omnipod.com Juicebox Omnipod has been an advertiser for a decade. But even if they weren't, I would tell you proudly, my daughter wears an Omnipod. Omnipod.com Juicebox terms and conditions apply. Eligibility may Vary. Why don't you get yourself that free starter kit? Full terms and conditions can be found@ omnipod.com juicebox they transported us to Iowa City.

[Sam]

We couldn't go in the room because they were putting in arterial line. We had no idea what this was. We were able to finally go in at 3 o' clock in the morning just to be told that we cannot hold him until this arterial line comes out because it's connected through his umbilical, like where his umbilical cord would have been. So his belly button. And connected. Connected to the major artery in his heart. So that way they could do blood draws without having to poke him, because they were checking him at that time every hour.

[Scott]

Okay.

[Sam]

So they didn't want to constantly poke him if they didn't have to. On top of giving him insulin shots. Because he was on insulin shots at that time already.

[Scott]

Okay. Wow. How much insulin do you give a newborn?

[Sam]

So he was on a sliding scale, and I still have all the records of them. He was getting anywhere from one to three units for the first nine and a half months. Nine and a half to ten, or, I'm sorry, nine and a half to a year of his life. It was. It just depended on where his sugar was.

[Scott]

Jeez. Did you breastfeed?

[Sam]

I did not breast feed, but I did pump.

[Scott]

Okay.

[Sam]

Because he was. He had the arterial line in for so long that I couldn't pick him up.

[Scott]

I see.

[Sam]

And they did. After about three days. I ended up having a breakdown. And they. They were able to get it to where I could put my arm, like under his head and just kind of hold him inside the incubator. Like that?

[Scott]

Yeah. How'd you make it three days? I'm only talking to you for 15 minutes. This was 10 years ago, and I'm about to have a breakdown. This is really upsetting. Seriously, you know. Wow. Okay. So they let you kind of nuzzle in with them a little bit there, but they're very worried about that. That arterial line.

[Sam]

Yes. Yeah, I was, too. It's like you're telling me if I pull on this or if it gets snagged on anything, like it's connected to major arteries.

[Scott]

Yeah, no, of course. And you're 20 again. I'm. It's. It's not going to leave me that you're 20 years old while this is happening. I don't. I think I was at a movie theater when I was 20 years old. You know what I mean? And you're in a hospital doing this. You're On a sliding scale, what do you do? Do you let him eat first, then give him insulin? Are you like, how does that all work back then?

[Sam]

So they would have us. Let me back up just one second here. He, when he was born, he was born under £4 as well.

[Scott]

Okay.

[Sam]

He could not maintain his own body temperature, so he had to be in like a heated incubator on top of it with him being so small. And they just kept saying, like, he's the healthiest baby in the nicu. He's the healthiest baby. And I'm thinking, how is this healthy? Like, he's got all these tubes connected to him and they come in and said he wasn't eating enough. So they had to put this NG tube in. Mind you, I'm a first time mom. I have no idea what an NG tube. I did not take any nursing classes at all whatsoever. And so I lost it over this NG tube because he's got all these other wires. And one of the nurses, after I completely lost it on everybody came in and she said, just because sometimes as doctors and nurses, we forget that something so minor, such as an NG tube, which is just a feeding tube, come to find out something that's so minor to us is actually a big deal to the parents. And sometimes we don't take a moment to reflect on that and explain that this is a good thing to get the nutrients he needs and to see how we can better help him with his sugars.

[Scott]

Yeah.

[Sam]

So that is like a moment that stuck with me for.

[Scott]

Scary, right?

[Sam]

Honestly, up until this day.

[Scott]

Yeah. Yeah. It's just a scary sight. He's so little. And what's that tube go in his nose? Is that right? The Dexcom G7 is sponsoring this episode of the Juice Box podcast and it features a lightning fast 30 minute warmup time. That's right from the time you put on the Dexcom G7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things, in my opinion, make the Dexcom G7 a no brainer. The Dexcom G7 comes with way more than just this. Up to 10 people can follow you. You can use it with type 1, type 2, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part. Alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com juicebox links in the show notes [e-mail] to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.

[Sam]

Yes.

[Scott]

Yeah. Oh, geez.

[Sam]

And all they do is just pour the breast milk in through the tube and it goes in through his nose and gets into his digestive tract. But I didn't know that. They just kept saying, another tube, another tube.

[Scott]

This boy you made this baby with, he's 20 as well.

[Sam]

So he. Oh gosh, how? He's five years older than me, so he's currently 34 or 35.

[Scott]

Okay, 35, but he was like 30, but he's 25 then, so he's still no help. I remember myself at 25. Yeah, yeah, I gotcha.

[Sam]

And he, like, of course I was on maternity leave. We still have bills to pay on top of it. So he. I'm two hours away from him at this hospital with our newborn. He's back at work like two or three days after we had the baby. Just because we still have to have an income to be able to pay our bills and pay for insurance and everything else. We started in the bay one, which is like critical unit, and then they moved us, like to each bay and there's up to three bays. And just like the normal NICU by the time we got to Bay 3 was when they finally did the genetic lab to see what was causing the diabetes. We found out that our insurance would not cover this lab. And it's a $12,000 lab just for one person. They wanted all three of us to get this done.

[Scott]

Oh.

[Sam]

So we tried to opt out of getting this lab done because who has $12,000 in their back pocket?

[Scott]

Well, it sounds like 36,000.

[Sam]

Well, yes.

[Scott]

Yeah, yeah, yeah, yeah. But it's. You're independently wealthy, right? Your 25 year old boyfriend was working as a rocket scientists. Maybe. I mean, how.

[Sam]

Yeah, right.

[Scott]

Well, wait. What a weird ask. Hey, you guys got 36 grand to do three tests? We don't.

[Sam]

No, no, no. Like, we. We do not. And not knowing how long we're gonna be here for, and I was gonna be off of work. We can't just spend money just because we want to spend money. Like that was not an option.

[Scott]

What'd they end up doing for that then? I mean, because you have the diagnosis. So how'd it work out?

[Sam]

So at this point, in time, we did not yet find out that he had that KCNJ11 gene mutation. We just knew he had some type of diabetes. And they, they did say that several times that they believed it was linked to genetics because they, there was all, out of all the other labs and tests that they ran, like there was no explanation. And this was the only test that they hadn't run yet.

[Scott]

I see.

[Sam]

So they knew it was linked to genetics, but they couldn't pinpoint exactly how without this specific specific test.

[Scott]

Okay.

[Sam]

And we told them like, we can't do this, we can't afford it. That's just not an option for us. Well, we did some research and found out that if we paid for shipping in the uk, they would do the lab for free because they wanted to study this.

[Scott]

Yeah, it's 36 grand or 45 cents for a stamp. Which would you prefer? Yeah, thanks a lot.

[Sam]

Right. So we like explained to them we would be more than happy to pay to have it shipped to the UK to have them study it. And like they would share the answers or whatever with the hospital. The hospital did not want to go that route. And I understand it now, at the time I didn't but contamination and everything and all the things. So I was like, I don't know how we're going to pay for this. Like we're just not going to do it. We'll just do do with what we got. We know the problem and we can go from there. We're just trying to dig deeper at this rate.

[Scott]

Okay.

[Sam]

Couple hours later he's back home, two hours away and me and baby are there. About two hours after we made this decision, a nurse comes in with a needle. And I kid you not, that needle was probably six and a half inches long. The needle was longer than the baby's arm. And I was like, what are we doing? Like, I haven't seen an insulin shot like this before. What are we doing here?

[Scott]

Yeah.

[Sam]

And that's when they explained they were doing the genetic lab behind our back

[Scott]

and then going to charge you for it later.

[Sam]

So I freaked out because that's what I thought. I freaked out again. Another freak out episode.

[Scott]

Freak out in bay three. Freak out in bay three. Yeah, yeah, yeah.

[Sam]

I got the direct, the pediatric pediatrician medical director in there. I got his entire endo team in there. And it's, it was this one specific doctor that had ordered it. And to this day I still will not speak to her. If she's the only on call, I will call and call and call until I get somebody else, I will not talk to her. And I'm on the phone with my spouse and he's yelling at her. I'm just a blubbering mess. I'm having a full on panic attack at this point because finally everything just got to me. And that was the tipping point. Come to find out they made an agreement that the university would cover the cost, but never expressed that to us.

[Scott]

Yeah, communication is not great. Also, I like how the same group of people who. We're not concerned about the muddy boots, we're concerned about contamination. That's interesting, right? Everybody's got their heads screwed on nice and straight. Yeah. Again. So how simple would it have been just to come to you and say, hey, great news, you know, the university's going to take care of the testing. We're going to test the baby. Now. You would have been like, oh, that's amazing. Thank you.

[Sam]

Yes, absolutely. And it really would have been just that simple. And I wouldn't have freaked out for like the hundredth time at this rate.

[Scott]

Yeah. So, okay, so. But once you get that diagnosis, I mean, do you treat him any differently than you were prior to knowing.

[Sam]

Yes.

[Scott]

Okay.

[Sam]

So we were in the hospital for several months and this lab could take anywhere from 6 to 12 weeks to come back because it tests literally everything in its dog. So we're still in the hospital, we're still doing the insulin on the sliding scale as normal, making adjustments as needed with his body. Body. Finally, the day comes for. I'm sorry, let me back up here. After that freakout episode with the genetic lab, they thought I had postpartum depression. So they sent social services in. I looked at them and I said, okay, I'll tell you right now, I do not have postpartum depression. I know it's a very real thing and I know a lot of people deny it, but let me tell you about my experience from the minute I had my son up until I got here. Really, let's backtrack up to my 35 week gestation mark up until today because these are all the things that's happening. And you're telling me that you wouldn't have a minor freak out.

[Scott]

I don't love the word gaslighting because, well, I have my own reasons. But that feels like that's what that is, right? Like get a beat on your head for days and days and days. And then when you go, stop it, they go, hey, why are you so upset?

[Sam]

Yeah. And I, that, that's literally what I told him. Like, you have to Understand, I've been through all of these things and I finally just combusted.

[Scott]

Yeah, I would imagine.

[Sam]

I think it's justifiable.

[Scott]

Listen, I. I want to be honest with you. Yesterday I had to make three phone calls, okay? One to insurance for my car, one to something we're purchasing, and one to another. Just three unrelated issues in my life, right? And not one person on the phone appeared to have any grasp of their job, what they were supposed to be doing, what was needed, you know? He'd ask a simple question, they'd say, I don't know. And I'm like, well, if you don't know, who. Who know? You know what I mean? It would be like if you went to the grocery store and pointed at the cash register and said to the cash register person, what's that? And they said, I don't know. Like, it was like it was on that level. Okay? So these three calls, they go exactly the same way. I walk downstairs and spend the better part of six minutes ranting at my wife. And I don't. I don't even know what I was. I was just like, why is everyone. I mean, am I just getting old? Like, what's happening? How come it appears that no one fundamentally understands their job or cares or is motivated to look into it any deeper? When they. When the answer was I don't know, I said, well, what are we going to do about that? And one girl went. She went like, oh, no. Yeah, like, I guess we hang up the phone now and you'll have no resolution. Is like. Like the vibe of it. I had not been through all the things you were through. I just had three phone calls that were frustrating, and I had a freak out in Bay 3. I just want you to know. Except my freak out was in the kitchen.

[Sam]

I had a freak out in bay three.

[Scott]

Yeah, yeah. You said, don't. I wouldn't judge yourself too harshly. I was right. Oh, well, Sam. I was just like, what is happening? I. I was like. I started saying, we have to move, and she goes to where? And I'm like, I don't know.

[Sam]

That's awesome. I love that.

[Scott]

It just. It's been. I. I've been alive too long now. Do you know what I mean? Same. Like, I'm a fairly competent person. I'm not no great shakes, but I'm fairly competent. You put me in charge of something, I'll get it done for you. If I don't know, I'll figure it out. I don't think I've ever looked at A person and thought and said to them, oh, I guess we'll just all just give up and lay down, you know, like, what in the hell? Oh. Anyway, I would pretend like they're looking for the answers. I just want you to know that if I was you, they would have arrested me in that hospital.

[Sam]

It was. It was bad.

[Scott]

Yeah, I think you did fine is what I'm getting at. But go ahead.

[Sam]

I appreciate.

[Scott]

Yeah, yeah.

[Sam]

I mean, after that, like, they never sent in another social worker. They had many more freakouts, but they did not send anybody else in.

[Scott]

I would bet not.

[Sam]

Oh, yeah. I explained to the social worker, too, also, like, I am my child's voice. He doesn't have a voice. He can't even stay awake for more than five seconds at this point in his life. Somebody's got to speak up for him, and that will be me. And you're telling me that he has this disease that he's going to have to have or this disability that he will have for the rest of his. His life. Somebody's going to have to be in his corner, and that's me.

[Scott]

Yeah. And not for nothing, I still look like I looked at my high school graduation photo. So there's a lot. Oh, if that social worker would have come into my room, Sam, they would have had to call a hostage negotiator. After that, I would have been like. I would have been like, that's enough.

[Sam]

We're done here.

[Scott]

She can't come back out now. How's that sound? Someone sends somebody in here with a goddamn brain in their head because I can't do this anymore with you people. I'm sorry. Go ahead. We got to get past this part.

[Sam]

After that, I think it was really. Honestly, a couple of days later, I think they were just tired of me being in the nicu because they ended up moving us to the pediatric floor. And he was the smallest and youngest child on the pediatric floor. And many of the nurses kept saying, we've never dealt with a baby or a child this small or this little or this young. I was like, what are we doing here? But then it was like, when we were on the NICU floor, they're like, we don't typically handle diabetes. Like, they were bringing pediatric nurses from the pediatric floor into the NICU to be able to care for him. But then when we went to the pediatric floor, they were like, we don't really know what we're doing here. And I was like, I just want to go home at this rate.

[Scott]

I got kicked out of the Hotel I was in previously. I think. I think this is where they put me, by the way. What bay are we in, by the way? Because. Right, well. So. Okay, so now, I mean, you get this back. Can I read this here? A KCN J11 mutation is a change in the KCN J11 gene which gives instructions for making part of the KATP channel in pancreatic beta cells. That channel helps the body decide when to release insulin. If the gene is altered, the channel may not work normally. So insulin can be released too little or too much, depending on the specific variant. Does that all sound right to you?

[Sam]

Yes.

[Scott]

Okay.

[Sam]

Yes, that is actually correct.

[Scott]

And he gets not enough. His variant is not enough insulin. Is that right?

[Sam]

That is correct. Okay. So we went home. When they finally discharged us, we still went home on a sliding scale because this lab still hadn't been back by that point.

[Scott]

Okay.

[Sam]

We had to drive up there. I believe it was like every other day. We had to drive up there every day. We had to talk to them to let him know his sugars, what he ate and everything. We were doing checks every two hours by month, two or three of us being out of the hospital, mind you, he's. We were in there for quite some time. We're approaching our first birthday. That was actually. No, I believe he was closer to 14 months old, I think is what it was. Is when we finally got the lab back, if I remember correctly.

[Scott]

You should have tried Ubereats. They're pretty quick.

[Sam]

I mean, right.

[Scott]

Am I right to say he could have had neonatal diabetes or congenital hyperinsulinism? Is that right? Is it the two things that could. But. And the insulin, by the way, the other one. Congenital hyperinsulinism. Other. Cause beta cells to release too much insulin. I mean, that's. I don't know. I think I'd choose not enough before. Too much if you made me pick. You know what I mean? Jesus.

[Sam]

Yes.

[Scott]

So what is this technically? Is it neonatal diabetes then?

[Sam]

That is correct. When the lab came back, because he was. They just said, yes, type 1 diabetes, even though they knew it wasn't. But until they could get those answers, they couldn't. For insurance purposes. They couldn't just put whatever on there, so they just gave them type 1 diabetes. And then when the lab came back, we both of us had to attend this meeting or this appointment, and they explained that he is a neonatal diabetic with a KCNJ11 gene mutation and that 1 in 600,000 babies are born with it.

[Scott]

Oh, jeez. Awesome.

[Sam]

Yeah. And I got that one.

[Scott]

I got that kid. I made that kid all by myself. Yeah. Thank you. Anybody out there listening who wants to give me too much credit? I just want you to know that I just, you know, typed explain KCN J11 mutation into a browser. And. And I'm just very good at reading and sounding like I'm. It's coming out of my head in case you're all just like, oh, my God. Scott knows so much about things. I. I really don't. I just. I found myself saying. It was so much confidence. I was like, I clear. I just threw that into Chat GPT real quick, so. And by the way, I only use Chat GPT when I'm. When I'm recording because the font is bigger anyway. That's neither here nor there, so. Jesus. Is there anything else that comes with this mutation or is this thing with the insulin, is it. Is it the entirety of its impact or are there other things?

[Sam]

So with my son specifically, he really just has the one mutation, but there are other kiddos out there that I found on, like, mommy Diabetic support groups where they have, like, additional things attached. And I knew you were going to ask me this question. I meant to look up what the other one was, but, like, they have other mutations with it or they have additional, like a disease that is a side effect or a symptom of the. Casey and J11. He does not. He strictly just has this. Now, obviously we monitor for the other things when he goes for his appointments, but there's never been any flags that's been waved to lead us to dig deeper into seeing if he has those.

[Scott]

Okay, well, I mean, so I guess you count yourself lucky there, right?

[Sam]

Yes.

[Scott]

I mean, how do you do. You seem reasonably upbeat. How do you, like, were you always this way? Or is it a. Is this an attitude you've grown into over time?

[Sam]

So this is my favorite question. I love when people ask it. My sister and I had a really, really, really crappy childhood. It's like, think of the worst thing ever. And then times that by, like 50, I am just adapted to environments. I mean, we've lived in 60 some houses that I can remember. Twin schools. No, seven schools, 10 states, child abuse, the whole nine yards. We went through it all, and I just decided I wanted to be a better person in life than what I was given and handed.

[Scott]

Okay.

[Sam]

And I wanted my child to have a better life. And the entire time in the nicu, they kept saying, like, I'm surprised you haven't broken, like, more or, like, completely Lost it because my minor combustions were just minor. And I explained to them, and I will explain this to anybody to this day, it's not about me. I have to be strong for my child. And he's looking up to me all hours of the day. And I want to be the best role model I can be for him because I didn't have that.

[Scott]

Yeah. I mean, I don't have all the details about you growing up, but I can tell you I didn't grow up well. And I often have a feeling of like, this is not even the worst thing that's happened to me, like, you know, this year, or, you know, you should have been around when I was 15. Like, that was. That was. That was tough, you know, so. Yeah, I mean, I get your point. You have a lot of perspective, right?

[Sam]

Yes.

[Scott]

Yeah.

[Sam]

And I just. I want him to. Just to learn. Okay. He sees mom being a good person. He sees dad being a good person, doing kind things. Doing good things, good deeds. I want him to learn from that.

[Scott]

Yeah. So this is why you use a different name than the one you were given, because you don't want to have attachment to your upbringing, Is that right?

[Sam]

No, I use a different name than the one I was given because I used to be a bartender and I am a part time 911 dispatcher. And I got tired of people saying it incorrectly. And most of my 911 calls would be, oh, how did you get your name?

[Scott]

You're like, hey, lady, you're upside down in the car right now. Why don't you focus on that? Okay. What an interesting name. Shut up.

[Sam]

Yes.

[Scott]

So you're like, just call me Sam.

[Sam]

Yeah, pretty much. It's awesome.

[Scott]

I'm gonna. I'm gonna try that.

[Sam]

Yes, right? It's my alter eagle.

[Scott]

Yeah, that's funny. You know, moving forward, I mean, I. I'd be remiss if I didn't ask you a little bit about raising a tiny little baby on insulin. Like, what was that like? You know, were there. Did you have a cgm? You know, if not, when did you get it? Have you gone to pumping? You know, how have you managed over the years?

[Sam]

Certainly. So when we first got home, he was still on his sliding scale because we didn't have all the answers that we have now. Every two hours, we would have to. He never wanted to wake up. He's always, even to this day, been a really good sleeper. We would have to force him awake to do his feedings and to do his insulin shots. We would give him his insulin Beforehand let him eat and then wake him up two hours later. And that was just a, a really vicious cycle. But we made it through. We got through it. Yeah, dad and I, even though his dad was the only one working, we. He would even wake up with me. Even though he had to be up at work by 8 o' clock in the morning and everything else, he. Because he knew I needed a little bit of the extra support until I no longer needed that extra support, which was really great. And then about. And mind you, we're still doing pokes by with a baby you have to do them on their heel instead of their finger. Or at least my baby because his fingers were too small. So we were doing his heel by the time he started walking. That's when we had to switch to the actual finger because they were worried about dirt getting inside of an open wound, even with a band aid on there. And then about 17 or 18 months old, we were finally approved for the dexterity com for and like the FDA actually approved us because at this time they were not approved for anybody under the age of two.

[Scott]

Okay.

[Sam]

So we had to go through a lot of hoops to be able to get that. And with his condition being what it was, everybody wants to study it, everybody wants to know all the ins and outs because he is actually the only the fourth patient ever in Iowa to be diagnosed with what he has. And he was diagnosed eight hours after he's born. So nationally he is the youngest child that's diagnosed with what he has. So everybody was like getting everything that they could tasked for us to be able to have all these tools such as like the Dexcom G6 at that time and everything.

[Scott]

Wow, that's a lot to go through. It just genuinely is. How's he doing today?

[Sam]

So today he actually by the time he turned 2, we found out that we would be able to switch him to an oral medication called glyburide. And he they the pharmacy and there's only one pharmacy besides the University of Iowa within a 4 mile or 4 hour radius of us that can make his medication the way that it needs to be made. He takes it by mouth twice a day and he's been on that since he's been too. So no insulin. Well, let me take that back. He only gets insulin if he's above 300 for three hours or more or ketones are present. We've given him insulin four times in the past two years.

[Scott]

Okay. So I was reading about this earlier but I mean help me a little more with that. So it's a sulfona urea pill, Is that right?

[Sam]

Originally, yes. It comes in pill form and then they compound it, the pharmacy compounds it into a liquid form for him.

[Scott]

I see. And the drug acts. Is this right? The drug acts on the same potassium channel pathway. Long term studies have shown this can be effective for many patients. Switch from insulin to the pill under special supervision. Do you have any idea why that works for him and doesn't work? It's something about unlocking. I'm going to need your help if you know. But like there's something right about this mutation that's like stopping the transfer of. I'm out of my depth here all of a sudden. Can you tell me more about how this all works?

[Sam]

So the best way that it's been ever been explained to me is a type 1 diabetic, as most people know, not everybody, but most people know, is insulin dependent. A type 2 diabetic is. Is more manageable because they are not insulin dependent. It can be managed for the most part and for some people through diet. Then there in the middle is Elliot. That's my son's name. I'm sorry, I never said his name. Elliot. He has what they consider, even though he's a neonatal diabetic, he's treated as if He's a type 2 too. Diabetic. And glyburide is not insulin. It just gives the pancreas a little bit of a boost to keep working.

[Scott]

Okay. I mean, is that generally. Does he still. Does he wear a CGM?

[Sam]

Yep, he wears the Dexcom.

[Scott]

Okay.

[Sam]

G7.

[Scott]

Okay. What happens if he doesn't take the pill? Like what if you forget the pill one time?

[Sam]

So perfect example. I mean, we've never forgotten his medicine, but a perfect example. Yes. No, I'm sorry. Easter. So Sunday. So he gets it twice a day. He gets a dose in the morning and then he gets a dose at night. He got his dose, his evening dose and usually it's about 5 o' clock when we give it to him, but he gets it about 5 o' clock and then he can eat a half hour after he has it. So we did 5 o', clock, he was eating by 5:30, 6 o', clock, approximately 7 o'. Clock. His sugar was 350. He's going through a growth spurt right now. So we've had to increase his medicine and haven't found the right dosage yet for it to keep up. So at that time we had to give him insulin because his glyburide wasn't keeping up with what he had eaten for supper and everything. And his pancreas just wasn't kicking in. And we go through spurts where, like, sometimes his pancreas will work really well. And our max is 11 days without any type of medication needed. And then there's been days where we've been hospitalized because it's just not working at all. Insulin's not working. Glyburide's not working.

[Scott]

I see. Is this expected to shift throughout his life?

[Sam]

So when he was first born, they told us there was a 75% chance that he would outgrow it. By the time he turned 2, it turned into a 50 chance. By the time he turned 4, it turned into a 25 chance. And now we've just kind of given up on asking because if it was going to happen, we kind of feel like it would have. And we've gotten over the hard part now.

[Scott]

Okay.

[Sam]

And they did say there's a chance of it, like him outgrowing it, but then coming back later in life, especially as a teenager.

[Scott]

Wow. I don't normally like to do this, but I'm going to read this because I think it's super interesting. So, functionally, glyburide works because it bypasses the broken glucose sensing step and directly pushes the beta cell toward insulin release. In KCNJ11 disease, the problem is usually that the KATP channel stays too open, so the beta cell membrane stays too quiet and does not depolarize. Normally. When glucose rises, that means calcium does not enter well and insulin granules are not released. In plain language, normally, glucose enters the beta cell, ATP rises and the KATP channel closes. Closing that channel causes membrane depolarization. Depolarization opens voltage gate calcium channels, calcium flows in and triggers insulin secretion with an activating KCNJ 11 mutation. That channel does not close properly when ATP rises. So even if glucose is present, the cell behaves like it is still at rest and insulin release is blunted. The glyburide binds to the SUR one part of the same KATP channel complex and forces the channel more toward the closed state. So instead of relying on the defective ATP signal to close the channel, the drug chooses it pharmacologically. Drug closes it pharmacologically. Once the channel closes, the cell can depolarize, calcium can enter and the insulin can be released again. That is the core reason about how it works that is really fascinating and interesting and so strange that one little mutation stopped that odd thing from working like that little tiny thing that happens for people you don't even think twice about how about that.

[Sam]

And especially for it happened into somebody so small and so new to the world as well.

[Scott]

Yeah.

[Sam]

Like their body hasn't had any wear and tear at all.

[Scott]

Yeah, no, right. Just. It's just that it's that mutation and it's the one, would you say 600,000?

[Sam]

Yes.

[Scott]

Gosh.

[Sam]

And the way that they explained it to us because like obviously a big concern is if we have any more kids, like is this going to have to be something that like is this going to be something that will continue in other children? And they explained to us that since we never had the lab done, either his dad or I can carry the genetic trait for diabetes or that Casey and J11 gene mutation. One of us carries it or both of us carries it and it just became dormant in him.

[Scott]

So is that the reason you have one child?

[Sam]

No, we, we have since separated a few years ago we just decided. I never really wanted another one. Like I go back and forth but I just, I don't know. I definitely don't want to start over now because potty training is a whole other ball game.

[Scott]

You're still really young. Not that I'm telling you, go have babies, but like you're really young still like I can't like you're like so young. Do you don't feel young at 30? I guess this probably, I mean between the first part of your. You're probably like, I'm good. This was enough.

[Sam]

Yeah, it was very traumatized it like for a couple of years it was like the traumatizing factor for me. And then I just really. It boils down to I don't want to potty train anybody ever again.

[Scott]

Like the rest of it I'm fine with, but I am not getting peed on again. Yeah.

[Sam]

It's just that was the worst part, if you ask me about parenthood, is potty training.

[Scott]

I hate to ask this because it's going to be recorded and people are here but like did this whole experience with this mutation, do you think that's part of the reason why you're not together with the father or was it other things?

[Sam]

No, it was just other things. Like we were together very young age and we were together for almost 10 years, I believe it was. And we just grew apart and we were both going in a different direction.

[Scott]

Yeah.

[Sam]

And I mean we have a great co parenting relationship. He actually comes to my, my mom's family gatherings and we do like just did Easter together. He comes to Christmas and he is actually Getting married in a month. Yeah, next month. And they have a baby together. And this baby does not have diabetes.

[Scott]

Oh, I see.

[Sam]

So I was like, oh, maybe there's hope after all, that it won't pass on to the next. And I was like, but it's probably.

[Scott]

Well, it's also probably something between you and him. The mix of you two is probably what does it. So also, how. How old were you when you started dating?

[Sam]

Oh, 17 or 18.

[Scott]

Oh, God. I think it's a genuine miracle that you're still nice to each other. Like, that's awesome.

[Sam]

We got together in 2014 and I mean, he. We. I moved to Illinois after we separated. I had to move back in with my moms and get back on my feet and everything. He was still in Iowa at that time. Time. And he actually, him and his fiance, they moved 45 minutes to where I live. Not like with me, but to my area. And then they. They were about 15 minutes from our house. And then they just moved into the same, like, village. Because we live in a very small town where everybody's related to everybody, and you got 15 people and a dog, and that's our population.

[Scott]

Like, I'm going to ask a couple more questions that you can feel free to say no to because I feel like we understand the gene mutation thing and that whole process. I'm good. And we have a little more time left. So how much of your upbringing would you be comfortable talking about?

[Sam]

I'm an open book.

[Scott]

I mean, so how many. You're a. One of how many kids?

[Sam]

So my mom has three girls. My dad has. Oh, let me think here.

[Scott]

Are you under the second hand?

[Sam]

Yeah.

[Scott]

Yeah.

[Sam]

He has, like, 10 kids, but some of them, like, aren't his. But he helped raise them, so he considers them his.

[Scott]

Is he an incredibly handsome man?

[Sam]

I mean, I guess.

[Scott]

Is he. Well, is he wealthy?

[Sam]

No.

[Scott]

No.

[Sam]

Well, he makes money. Don't get me wrong.

[Scott]

I mean, that's. He's 10 kids spread out over how many people?

[Sam]

Three.

[Scott]

Three people, 10 kids. And he was abusive to you?

[Sam]

He. So he was not. But his second wife.

[Scott]

Wait.

[Sam]

Was very abusive.

[Scott]

So did you live with him when he was married to her?

[Sam]

So my dad. Yes, dad. My. My parents. My entire childhood went back and forth on who had custody of us up until about fifth grade, my dad. My mom had custody of my sister and I and my dad actually kidnapped us and moved us to a Southern state.

[Scott]

Sam, why didn't you lead with that? An hour ago, we would have never even talked about your kids. Diabetes oh, my God. Wait, you were. Wait, so what's. All right, so anytime. I just want to say. This is a generalization, but anytime the kids end up with a dad for any reason, I'm always baffled. So what's up with your mom? Because you're talking to her now. But what was wrong with her back then?

[Sam]

So my mom had her first child. So my oldest sister, she had her when she was 15. So she was a mom at a very young age. Her dad ended up getting custody of her because my sister is of a different race. And that was a very big thing during the 90s when we were born.

[Scott]

Your mom's father has custody of your sister?

[Sam]

No, no, no, no. I'm sorry. My oldest sister's father had custody of her.

[Scott]

I see. Okay. Your oldest sister's father. So she's. Oh, boy. This is. Okay, so your sister is. You're connected to your sister through your mother, but you two have different fathers.

[Sam]

Correct.

[Scott]

And he got custody of her due to her race.

[Sam]

Yes.

[Scott]

She wasn't being treated well in Whiteyville, where you live? Is that what you're trying to say?

[Sam]

No, no. What happened?

[Scott]

Okay.

[Sam]

No.

[Scott]

Okay.

[Sam]

I. I'm trying not to offend anybody.

[Scott]

Oh, good luck. Maybe you should stop talking then. Okay.

[Sam]

Right. He had several, like, political parties that backed their side of the family and ended up getting custody of her, saying that a white mother couldn't raise a child of another race.

[Scott]

Okay.

[Sam]

Because that just wasn't a thing then.

[Scott]

Can I be honest? It doesn't sound like your mom couldn't raise you because she was white. It sounds like. But does sound like she couldn't raise you. I just don't know why there were problems for sure. Okay, so that's all crazy.

[Sam]

Yeah.

[Scott]

All right, so.

[Sam]

And, like, her age definitely played a part into it. And there. There was a lot of other factors, but that was, like, their defense that they stood on was. I see the difference.

[Scott]

But when your dad comes and. And kidnaps you, he takes her too.

[Sam]

No, no, no, no. Her dad. Her dad had custody of her by the time she was four. We were just back and forth between my mom and my dad up until I was in fifth grade. And that's when he took custody, or he had kidnapped us. The reason my mom ended up not really losing custody, but she went through. And she had lost her job. She ended up getting evicted from her home, and she didn't want us to be essentially homeless. So my. My. That first time, my mom had given my dad a scroll, so that way we Had a roof over her head because she had nowhere to go with us.

[Scott]

I see.

[Sam]

She was living in her car for some time.

[Scott]

Your mom's living in her car for a long time. Your dad now has you and he's got custody of you. He gets remarried. That lady starts abusing you.

[Sam]

Correct. My sister got it the worst because she is a spitting image of my mother. Burns with a curl iron and everything. My mom obviously gets DCFS involved, has all this documentation, and essentially ends up going to court and she ends up getting custody of us back.

[Scott]

Okay. Were you ever abused?

[Sam]

Because when she had given us to our dad, she had signed over. Not really. Like, signed over all her rights, but stated like she was not fit to be able to provide for us at this time and is giving temporary guardianship to my dad.

[Scott]

Gotcha. So then the abuse gets. Allows her to get you back. Were you abused as well?

[Sam]

I was, but not to the extent that my sister was.

[Scott]

Oh, okay. She burned her with a curling iron and things like that.

[Sam]

Cigarettes. There was a few instances where she was pushed down some stairs.

[Scott]

Drugs involved at all?

[Sam]

Yes.

[Scott]

Yeah. I mean, it sounds heavily. Yeah. Okay. Your dad didn't step in.

[Sam]

My sister in 2017 had a huge psychotic break and ended up going to the psych ward. And he. She had to. To be able to be released. She had to, because it was court ordered. She had to attend, like, therapy and family therapy. He has stated in, like, these therapy sessions, because they're. I mean, they're no longer married, that he had no idea that it was ongoing and, like, you know, he was really messed up. He's now 20 some years sober.

[Scott]

Oh, good for him.

[Sam]

And he is, like, trying. Trying to rekindle the relationships kind of

[Scott]

drugs are we talking about?

[Sam]

Think of the hardest thing you can think of and all the other things combined.

[Scott]

So we're looking about meth, heroin, stuff like that.

[Sam]

Age I do not know about. But the others. Yes.

[Scott]

Yeah. My gosh.

[Sam]

Well, I believe a few times fentanyl was involved as well.

[Scott]

Oh, yeah, yeah, sure. Let me just get right to the source. And nothing. Was any of the abuse sexual?

[Sam]

No.

[Scott]

Okay.

[Sam]

Gosh, no, no, no.

[Scott]

I mean, I. Can you imagine the situation you're in where you're like, oh, well, there's good news. So. Jesus. Wow.

[Sam]

Well.

[Scott]

And did any of that have anything to do with you, your relationship? Like, when you. I mean, five years older when you're 20? Like, so you were dating an older guy when you were younger? Why? Because you were looking for, you think, like, stability, like Better decision making than you were, than you had access to.

[Sam]

I mean, we worked together, we were friends for a little while before we actually started dating. And I was just attracted to him, actually, if I'm being honest, and he actually knows this. My friend and I were playing, making bets on to see who they could. Who could get with him before the other. And then it turned into a 10 year relationship.

[Scott]

I was gonna say, do you see this as you having won that game or losing?

[Sam]

Right. But yeah, by the time my dad had kidnapped us, you know, fifth grade, it took my mom two years and two to four years and $140,000 for her to be able to fight the courts to get us because Illinois would not cross over into state lines. And mind you, we were in Mississippi, and that's several state lines.

[Scott]

Can I just make a public service announcement? You all don't need kids, you know what I mean? Like, do it. Look into yourself for a second and say to yourself, am I the kind of person who's gonna burn somebody with a hair curler? Am I the kind of guy who might, you know, do meth on a Wednesday afternoon? Maybe I don't need a baby. You know what I'm saying? Like, please, all of you, just please. Making this podcast has been one of the best and worst experiences of my life. I have to tell you, like, there's. There's times when you hear stories like that and you just think, that is not part of my reality. And it's hard to believe it's real. But you talk about it with, like, such, like, it just feels so normal for you. Do you know? I mean, like, when you're talking about it, if you wrote that story down and had me tell it, I'd be sarcastic and ridiculous and I'd be like, can you believe this? How does this happen, Bubba? And you're like, no, no, that was Tuesday. That happened all the time. Okay. You know what I mean? It's very. I'm so sorry for you. But. But at the same time, and the reason I kind of wanted to bring it up, and what I'm going to close here with is, did you do therapy to get through this? Was it just a conscious decision you made? I mean, how is it you're not drunk or high right now? Like, what. What do you attribute all your success to?

[Sam]

So I actually did not have, like, a huge psychotic break. My sister's was in 2017, mine was in 2014, actually, right before I met my son's father. My boyfriend died on a motorcycle accident and I started drinking heavily because growing up, I mean, we had seen all this stuff, so we both said, like, we'll never do drugs, we'll never drink. 2014, my boyfriend dies. It's my senior year. I'm graduating or had just graduated. So then I started drinking heavily. And then I actually decided, like, I don't want to do this anymore. Like, I'm better than this and I don't want to go down the same path as my parents did and everything. So I just started doing better. And then after my son's father and I had separated, I. I didn't know how to be a single mom because, I mean, I. I've been with this guy since I was 18. And then all of a sudden I got this beat, or not really baby, but this toddler, I'm on my own. I'm starting from the ground up. So I did seek out therapy after we separated. I believe it's in 20. 22. 21 22.

[Scott]

Yeah. Good for you.

[Sam]

And they gave me some healing or some helping tools, and now I'm here.

[Scott]

Yeah. Good for you. That's really awesome, Sam. Congratulations. That's a very adult decisions you made in there. You think you made them for you or did you make them for your son? Or a little of both.

[Sam]

I would say the personal growth was 100% BE for both of us, but mostly it is so he has a better life than I had.

[Scott]

Sam, you broke a circle. You must be very proud of yourself. All right, we got to get her to move. Sam.

[Sam]

Hold on.

[Scott]

Sam. So we do have to get you better Internet though. I said you must be very proud of yourself.

[Sam]

Yes, I am.

[Scott]

Good for you. That's awesome. Wow.

[Sam]

I'm all about breaking all the generational curses that I can.

[Scott]

Yeah. No fentanyl for you?

[Sam]

No. And like people say, it's weird that my son's father and I have this great co parenting relationship where we have Christmas together, sometimes we go on vacations together. Why is it weird? Is it because society tells us it's weird? Because if he doesn't go with or I don't go with, then we're missing out on the excitement with our child. We're missing out on an experience with a child, making core memories with our child.

[Scott]

Yeah.

[Sam]

Why does society say it's weird?

[Scott]

Well, listen, on top of that, I'm gonna do a little guessing here. You'll stop me if I'm wrong, Right? But it doesn't. He probably didn't grow up great either. Is that right?

[Sam]

Correct.

[Scott]

Yeah. So you're two people who came from bad circumstances who both decided that's not going to be who we are. You guys probably just got together too early. If you made me break down your relationship, it sounds to me like you were, you know, two people who found each other and probably supported each other, getting through all this crap that people put on you when you were younger. And then you get to a certain point where you realize had we not been thrown together like this, we probably wouldn't know each other and this probably wouldn't be a relationship that we had. And so then you very healthily separated, but kept yourselves together when your son's involved. And I mean, honestly, this might be the healthiest, healthiest thing I've ever hurt in my life. That really does make a lot of sense to me. Am I getting that about right, do you think?

[Sam]

Oh, 100%.

[Scott]

Yeah. I mean, I've been doing this for a while, you know. So this is the part where someone leaves a review later that says, he's so full of himself. I just heard he. She tried to tell her story, but he made it about him. It's a conversation. I'm just bringing stuff up. I saw your review. Go to hell. Okay, but I think it's possible my sarcasm doesn't translate to everybody, Sam. Do you know what I'm saying? Oh, yeah, yeah. Neither here nor there, though. That. That really is. That's really well adjusted decision making on both of your parts. Do you think if you guys would have met when you were 30 and you had normal lives, do you think you would be together? Or do you think you wouldn't have enough in common to be together?

[Sam]

We probably wouldn't have really enough in common.

[Scott]

Yeah.

[Sam]

Honestly. Yeah.

[Scott]

You're like two people who were stuck in a bank robbery together. And you hung out for a year after that until the trauma was gone and then you went your separate ways.

[Sam]

Yeah, yeah, yeah.

[Scott]

That's kind of nice.

[Sam]

I would agree with that.

[Scott]

Yeah. Now, Sam, here's the last question. Are you dating? Are you looking for a person? Are you happy single with a 10 year old? What is your play?

[Sam]

So I. After we split up, I was adamant about, like, working on myself, just being me and my son. I had just started at 911 dispatch. I became really good friends with one of the officers, actually several of the officers. And him and I were just friends for several months. And we are going on to year three of dating.

[Scott]

God damn, Sam, you are a success story. This is it.

[Sam]

Well, I appreciate that.

[Scott]

From fentanyl to happiness The Sam story. Sam's not her real name. We put that in parentheses at the end. It'd be awesome. Oh, I'm so happy you did this. What made you come on the podcast?

[Sam]

A lot of people kept saying, like, when I would comment or post in there about his genetic mutation because it's so rare, a lot of people just kept saying, like, they want to hear our story.

[Scott]

Yeah. Oh, I'm glad they said that. And I'm glad I was smart enough to listen. Look at me giving myself credit for answering your email.

[Sam]

Well, it is definitely appreciated. I love sharing our story and educating people because, I mean, a lot of people know type 1 diabetes or know about it. A lot of people know type 2 or know about it. But then there's that neonatal that nobody's ever heard of.

[Scott]

Yeah. And that if you. If people ask you, you would say, my son has neonatal diabetes. Is that how you would answer? Do you talk about the gene. Do you talk about the gene mutation or is that over people's heads?

[Sam]

Usually I do include it because I want to educate and I want to educate properly as much as I can, and I just try to explain them. Like, he's a neonatal diabetic with a KCNJ11 gene mutation. It came from him or it came from his dad and me or his dad or just me. And one in 600,000 babies have it. And that's all the answers that I really have. But I'd be more than happy to look into it further and provide you with more, More answers if you have any questions.

[Scott]

Sam, I am going to do my square best to keep this podcast going for 10 more years so I can interview you again when you're 40. I would love this. I feel like, yeah, I feel like you're gonna really be a. A person who looks back and doesn't recognize who they were 20 years before. I'm. I'm super excited.

[Sam]

Even to this day, I don't even, like, recognize who I was when I was, when I got kidnapped or, you know, like, even before then.

[Scott]

Yeah, seriously, Good for you. I'd clap if I didn't think it was reductive. I mean, I'm seriously happy for you with the decisions you made and. And all the things you've been able to accomplish. Really, sincerely, congratulations.

[Sam]

Appreciate that.

[Scott]

Yeah, congratulations. That's wonderful. Okay. All right, Sam, thank you so much. I really appreciate this. Hold on one second. Okay. Foreign. Thank you. To Cozy Earth. A long time sponsor, cozyearth.com use the offer code Juice box. At checkout. You will save 20 off of your entire order when you use that code. Don't let me down kids. Head over there now. Get yourself some joggers, some towels, some sheets. Save yourself some money. Support the the Podcast make your life beautiful and comfortable all at the same time. Cozyearth.com use the offer code Juicebox at checkout Dexcom Sponsored this episode of the Juice Box Podcast Learn more about the Dexcom G7 at my link dexcom.com juicebox. This episode of the Juice Juicebox Podcast is sponsored by the Omnipod 5. And at my link omnipod.com juicebox you can get yourself a free what'd I just say? A free Omnipod 5 starter kit. Free. Get out of here. Go click on that link omnipod.com juicebox check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox links in the show notes links@juicebox podcast.com. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook Group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out juicebox podcast type 1 diabetes on Facebook. The episode you just heard was professionally edited by Wrong Way Recording wrongwayrecording. Com.