Select Justice

La'viana Tells Select Justice What It's Like to Raise a Child With NEC

Author
Josef Rappaport, DPT, Physical Therapist
January 6, 2022

La'viana's pregnancy was completely uneventful until about 20 weeks, which is when everything changed.

Josef from Select Justice sat down with La'viana to hear her story. Here's what she had to say (full text below):

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This is truly an amazing story and there are so many parents who have NEC stories to tell so we are trying to get them out to the world, one family at a time.

If you would like to share your NEC story with us, contact us through Facebook or email us at [email protected].

Full interview text:

Yeah, I'm Josef. This is La'viana. Thanks for joining us. Thanks for joining me on the call. So, I just want to introduce you and mention how we met. You posted I posted in the, the NEC Facebook group that I was looking for people who would be willing to tell their story about themselves or about their children, and you graciously accepted, you reached out and said that you'd be happy to tell your story. So, here we are.

So, I work for a company that helps connect people going through certain cases, like, NEC, with, with resources and help them find all the resources that they can. And in the meanwhile, we're trying to build a community around NEC, people involved, in, in cases of things like that, and you want to hear peoples' stories. So, that's how we connected.

So, I'd love to give you the floor So, you can tell us a bit about the story. You can start from wherever you want. You can take us from pregnancy throughout labor and and up till right now, so go for it.

Okay. Hello guys. Thanks for joining. I'm La'viana. So we going to start from when I was pregnant with her. So, Sorry guys, so at around 20 weeks I found out what she was. And I was going to have a gender reveal but when I found out what she was the same day, they said I was dilated 2 cm and I was 4 and-a-half months pregnant with her.

So I was begging the doctor and nurses, you know, to me a cerclage she can stay in a cerclage is stitches in your vagina where it gets stitched up so your baby can't come out. So they they were scared. they were like I don't know about it because her head is already about to come out and things like that.

They said, they had seen her membranes and all when they were checking me So I'm like "wow", So I went to a different hospital, I took my IV out and everything myself, I left, because I was going to save my baby, I lost my first child because of this, you know, so I went to a different hospital And I told the doctor like, I know what the problem is, can you just give me my surgery?

I know it's a risk to pop her placenta and all that, but I have faith, you know. So, they gave me the surgery. I got stitched up. 2 weeks after that I caught an infection. So I got an emergency C-section with her at 22 weeks. So she was born at 22 weeks. During her, NICU say the first two days of her life. They were like, we don't know. You know, if she's going to make it, she had 4th grade hemorrhage on each side of her brain. She had a big PDA, her heart wouldn't close. Then 2 weeks after, the hospital ripped her skin off of her face, she caught NEC, they mixed my breast milk with fortified milk saying that my daughter needs extra calories.

They didn't have my consent or anything - Similac fortified milk, that's what they mixed it with, And I didn't understand that because I was pumping, you know, me pumping on first two days. They got her through a whole week. They got her through a whole, you know, month until they fortified her milk with, you know, My breast milk. So, after that she got real sick her stomach was getting really huge.

Like, I noticed it, they didn't notice anything, what's going on with my baby? Like, are you going to run some tests? Like, she doesn't look normal. She got really swollen, they were like, basically, all we can do is give her antibiotics, There's nothing else we can do for her, because we don't do surgery here. So, I called The Children's Hospital of Philadelphia. They transported her two weeks after that, and she couldn't get surgery because she was 1 lb and 4 oz.

It was a, it was a risk that she was just going to pass away and she got her surgery. So I had to wait, you know, until she gained weight. Kept faith, kept praying, they told me I had the sickest baby in the NICU. Now, she is 9 months going on 10 months. She only has her only diagnosis is chronic lung disease. But she got laser eye surgery. She got heart surgery. She got two surgeries on her stomach, do to NEC, And that's her story. wow, So you said she's 9 months now? Yes, what's her name? Willan, So does she still have the diagnosis of NEC right now? No. I didn't know that, so it could be considered like as if it's gone at this point. Yeah, she had it one time.

Oh, I forgot some parts. She had gotten 40 cm of her bowels removed. Wow, and she was still in for a little bit and then her belly started getting big again. So then they removed her appendix. And she still, you know, had gassy issues and things like that. So what I do is, do exercises with her legs, you know, or, if that doesn't work and she's too gassy and fussy I'll give her 5 ml of prune juice to move her stools, so, it is going to be a long way. A long journey.

You know, It's not over yet, it can come back. How has she been developmentally? Regarding her milestones and things like that? She's so smart, alert. She's on point. Like and she's very happy. Are you wouldn't even tell she was born at 22 weeks. That's wonderful. You had mentioned that the hospital gave her problematic formulas. The ones that are part of the lawsuits now. Yeah, the fortified Similac. They mixed it with my breast milk.

So were you interested in joining the, the case against those, the companies?

Yes, I'm interested, but I couldn't do anything at the time because they said she was still in that hospital and they didn't, you know. alright, so, thank you for telling the story. Is there anything else you want to mention like to anyone else Who's listening to this, who's watching this, who may who may have a child diagnosed with NEC or, you know, someone who, who went through it themselves? Anything you want to say to them? I just want to say like, I know no one talks about this. a lot like it's not common, you know, it comes out of nowhere, you know, it can be a first time thing with you or your kid; You can have like more than one kid and then you have your last kid or something happens, I just want to say, continue praying, don't lose faith. It is very serious, but do not allow a doctor or a nurse to tell you, to pull the plug on your child. Because they think that, you know, What's the word I'm looking for.

They think that your child can't do no more your child will tell you, you know, I had enough mom or dad. You know, I can't do it anymore. You know, they begged me to pull the plug on my daughter. And I never wanted to be a 'what if' mom. You know, what if I didn't do this? Doctors asked me, do you want to go in the room, And hold your daughter for the one last time? I said, no. She's not cold and Red. She's not doing none of that.

She still peeing, her brain is telling her to do those things. so something is working and we're going to get through this. So what I'm saying is continue praying and having faith. Doctors and nurses, they are not God. Good luck. Yeah, that's great. Okay, fine. Well. I think that's it. Thanks for joining us. Thanks for joining me and telling us your story. We really appreciate it. And we hope to get the word out to give other people, the community, and the voice that they need to get their stories out there.

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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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