Select Justice

One Mom's Amazing Story of Her NEC Miracle Baby

Josef Rappaport, DPT, Physical Therapist
January 10, 2022

This mom, Adiba, tells Select Justice why her baby who had NEC is her miracle baby and you won't believe why. It turns out that when her son dropped her newborn baby daughter he was actually saving her life.

Watch Adiba's testimonial here (full text below):

This is an inspiring story and just one of many.

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Here's the full interview text:

"I'll start a little before I found out I was pregnant with Lily. Before her I had 6 miscarriages. And when we found out we were pregnant with her, we went and got a miscarriage panel done. I was told that I have a blood clotting disorder and they finally found out why I was miscarrying, so they have me on medication to make sure that she's healthy and I carry to term.

Throughout the pregnancy She wasn't growing as quickly as she's supposed to. She was always on the small side to the point where even when she was born She was four pounds four ounces in the zero percentile at 36 weeks, which is still really small. At first, they said everything else was fine. She was healthy. They actually induced me because I ended up with atypical preeclampsia My blood pressure was crazy and so they ended up inducing me and then she was born a month and a half early, instead of May she was born in March.

They kept us just overnight and the next day they sent us home. Her temperature was low. It was a military base too, so they weren't even equipped to handle premies, but they sent us home after one night and the next morning I went to the restroom and while I was in there, she was crying. So her little brother or big brother, he was two, he picked her up and he tried to bring her to me and he tripped and he fell with her. So he dropped her and we went back to go into the hospital right away and they told us that she was fine, they did a CT scan, her head - oh, sorry, an MRI, her head was fine, everything was great.

But her temperature kept dropping, I believe, when we got there it was like 94.6 and we were there for several hours. And then at one point, I heard the doctor outside my door, arguing with another doctor. She wanted to send us home and this doctor happened to pick up the chart and he's like, why would you send her home? her temperature is dropping, it's down in to 93.7 and there's no way we can handle a premie here. We're not equipped to. We don't have a premie ward.

She needs to go to a different hospital. While they were arguing outside the door I actually just open the door and I was like, Hey, look, I'm going to put her in the car and take her to a hospital. Don't worry about it. And the doctor was like the guy was like, no, we're going to put you in ambulance and we'll get you to the hospital that way. Well, I agreed, but on the ambulance, she stopped breathing.

The next thing I know they're putting like a tube in her head. A tube down her nose and like a tube or a needle up her back, and they're cutting off her clothes. When they wheeled her into the emergency room at another hospital. And I was basically pushed to the side. It was, it was crazy. I had no idea what's going on. Like, my baby was fine one minute, they're going to send me home. And now the next this is happening. My anxiety was through the roof. My husband couldn't get a hold of us.

Have no idea what was happening and she was, she looked like a different baby by the time I go to her bedside again. She looks like a completely different child and her whole body was swollen. She was red. Her eyes were so poofy around her eyes. That you could barely see the splits of her eyes and she was moved to the PICU So like a baby like Lily when she's born the minute a baby goes home they're no longer clean.

That's what they call them, they call them dirty babies. So when you have to go the hospital, you can't put them in the NICU. They put her in the PICU and for the first few days. They were monitoring her looking for any kind of infection. They couldn't find anything. They ended up giving her fortified milk.

I remember that much, and her stomach one night when I was changing her, just looked really bad and I barely touched her and then out came blood with her fecal matter and It was really scary. I was like, okay, this isn't normal. The nurses come back in to take her for an x-ray and they find out that her bowels were swollen and necrotic tissue, and I had no idea what necrotizing enterocolitis was back then, but they ended up saying that they had to move her to the NICU. They made an exception for her and they put her back into the NICU and put her in isolation. and from that point on they started resting her bowels, so no milk. No nothing at all.

Except for the TPN, I think that's what it's called, and they told me that I could pick to either be with her or to go home with my family, because they couldn't have anyone coming and going because she was isolated. So I chose to stay with her. My husband was going to take care of the boys at home. It was hectic and crazy. My son was only two and he was just like, why did Mommy leave? Where is Mommy and he wasn't understanding what's going on, but Lilly kept getting worse and worse.

And at one point, she contracted MRSA and it was in the blood. She went septic, her organs started failing. The doctors even asked me and the nurses if I wanted a priest to come read to her final rites, and I just, I fell apart. I was just like, what are you saying to me? This is crazy. She's fine. She cries and no, I don't want him. He can leave. And I I was shocked. I was floored. I told my husband what they said and he came, he came to see me and to see the baby, but they wouldn't even let him in. They were like, your wife can come out to you.

But then you have to do the scrubbing, like scrub in and scrub out, and so he ended up leaving. But I remember one time, So they were doing spinal taps on her a lot. And it always break my heart. They don't let the parents in there when that's happening and you have to stand or sit outside somewhere and wait for it to be done. I would always break my heart when she would just scream that one scream that fades into nothing because she's just still going for so long. But the day she didn't scream, that was way more heartbreaking.

It's like she didn't have the energy to scream. She didn't have any life left in her. They would pick up her arm and It would drop back down. She wasn't responsive at all, and I remember thinking that like that's it, they were right She's not going to make it, but then I went to sleep. When I woke up the next day. The machines are off. She was gone. The lights are out and I freaked out. I was running down the hall, like a crazy person screaming for my daughter, but it turned out that she had gotten a bit better and they'd moved her to another room. They were still worried because the MRSA she had was a strand they'd never seen before.

So they had to bring in doctors from DC, actually, to take a look at her to put together a formula that will work eventually and monitor her cultures. The NEC was looking a little better. So they finally started to do the feeding slowly, it was with like an eye drop thing like they would just put some milk in there, and I was feeding her, like I would have a kitten, and she was so tiny. They finally found an antibiotic - well, four - working together that actually helped with the MRSA as well. And then she started to come around.

She was crying again, which was amazing. I think On day 28 they let us know that we could take her home. And thankfully, she had NEC to, which, if her brother hadn't dropped her it would have gotten worse. They told us that she wouldn't have made it. They told us the next day would have woken up and she would have been gone, especially because she's not breathing. Yeah, it was crazy because you're so conflicted about it. It's like - he dropped her, he shouldn't have been holding her but if he hadn't had dropped her we would never had noticed, and she would be gone, just like that. She would have stopped breathing.

We would have never noticed. It was crazy. They're not even sure that they were surprised because normally when kids get NEC, they're a lot smaller. They're born a lot smaller, but she was bigger, older. She was really tiny. So we have no idea. They gave her fortified milk and I didn't even know they were going to give it to her because she was on breast milk, only. And yeah, the next thing I know, they're talking about she needs fortified milk and I had no idea what that was. I didn't even have the chance to research it.

It's something, I want to say, it's even cow-based. And a lot of people worry nowadays that's actually what causes a lot of NEC for people, for children. But yeah, she's, she still has stool issues. She still, she will have constipation for weeks. Sometimes she won't go. She's 7, well she'll be 7 in March. I'm hoping that she doesn't have too much of a long-term effect, but I just spoke with somebody the other day in their late twenties and they still have issues with their stomach. Honestly, when it came across my feed the other day, I was re-reading it and there was so many little details that I had added to the story that I didn't remember and it made me emotional all over again.

We went from a rocky pregnancy not knowing if we were going to be able to keep her, to jump right into something that, I had never heard of necrotizing enterocolitis and I started Googling it. That was a really bad decision. The survival rates and then the other infections that come with the long-term care, all the surgeries. And on top of that doctors telling me she's not going to make it. You know, don't hold out your hope.

And I'm like, what do you mean, don't hold onto hope? how can you tell somebody that they're about to lose their child, when you're not even sure - on one hand you tell me, she's got a 20% chance to live, then it goes down to 3% because of the MRSA. And I just, you know, Kept my faith in God. I mean, God and medicine, but God, and she was strong. She's a fighter. She's still really feisty. Hopefully she, they caught it early enough to catch it before she needed surgery, which is another blessing in disguise that her brother dropped her. It was a close call. She loves to tell the story herself. She'll sit there and tell her friends that she's a miracle baby. She really is."

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If your child was diagnosed with NEC, Select Justice can help you fight for your rights and compensation.


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