Gastroschisis?

tylery · April 2015

At my 17th week appointment, we not only found out our baby's gender, but the doctor also informed us our daughter has gastroschisis.

I was really sad to hear the news and cried for the whole week. Did a lot of research on the issue and solutions, which only made me more anxious. BUT I haven't really thought about the situation much, and just realized I have a consultation coming up to check up on our little girl again and speak with a pediatric surgeon. I'm praying that it was just a misconception and that our little girl doesn't actually have gastroschisis, but in the event that she really does I just wanted to hear how other moms have dealt with this.
If you've had a child or know a family that had a child with gastroschisis, do you mind filling me in on how you felt, the process after birth, etc? Anything really to open my eyes up to whatever the doctor can't express from a parent's perspective.

piperpenguin · April 2015

Hi there. I may not have the answers you are looking for but I was a nurse that took care of babies with gastroschesis for years so I know about the condition. First off, I am so sorry about this diagnosis for your little girl. I am glad you are hooked in with a pediatric surgeon and have a meeting coming up to see if this is really likely for your little one. If it were my girl and she had this diagnosis I'd want to ask questions about how soon they close the gastroschesis or if they use a silo with gravity to slowly close.

As a mom you should ask what to expect after birth and what you will be able to do for your girl. Lots of mom's and dads feel helpless in this situation but know that there is a lot you can do for your baby! Even if you can't feed the baby right away you can pump milk to do mouth care and bank milk for future days. If you can get breast milk it is really the best thing for a baby with gastroschesis. If not sometimes there a milk banks that can bring in donor breast milk for babies. You can also help with diaper changes, positioning and calming your baby. I know it is not ideal bur enjoy the little things and know that time in the hospital is only temporary. Also try and tour the nicu where your baby would stay so that you can be familiar with the location, people and resources for families before birth. It will definitely help the transition.

I hope this helps. I don't mean to worry or upset you. If I can be of any help or if you have any questions please let me know and I'll do my best to answer.

Miz_Liz · April 2015

I don't have an experience with this or advice, but I wanted to say I am sorry you are going through this and I hope you get some good news/comfort at your consultation. T&P

cnl1224 · April 2015

I was told the same thing at our 20 week appt. The high risk ob basically said it was a keep an eye on it and wait and see what will happen. It is tough not knowing when she will arrive, how she will arrive, what type of surgery she will need etc. They haven't mentioned anything about talking to a pediatric surgeon but I will be asking about this at my next appt. Thank you for the advice!

tylery · April 2015

@piperpenguin I've got some questions written down to ask at the consultation next week. I have a brief understanding what might happen based on articles provided online from hospitals. It's true though; I feel kinda helpless in this situation because nothing much can be done until she's actually born

And what makes me sad is the fact of her staying in the NICU and not being able to come home right away. But fingers crossed that she doesn't actually have gastroschisis

jessandandy09 · April 2015

wow, I had to look this up as I was unfamiliar with this diagnosis. I am sorry you are facing this, you must feel so worried and scared. I will keep you and your sweet baby in my thoughts and prayers!

piperpenguin · April 2015

tylery said:
@piperpenguin I've got some questions written down to ask at the consultation next week. I have a brief understanding what might happen based on articles provided online from hospitals. It's true though; I feel kinda helpless in this situation because nothing much can be done until she's actually born And what makes me sad is the fact of her staying in the NICU and not being able to come home right away. But fingers crossed that she doesn't actually have gastroschisis

Hey-- thinking of you! Sorry I've been MIA. Keep us posted on how your consultation goes.

harperashleyn · April 2015

@tylery I am in the same boat. It really makes me nervous, because I have no idea what is going to happen. It's soooo stressful.

But you can only do so much. Staying positive.

tylery · April 2015

@harperashleyn yes!! Definitely trying to stay positive. I had another appointment today and doctor said everything else about my baby is a-okay. The saddest part for me is having to think about my baby staying in the NICU and not being able to bring her home, and hoping she doesn't feel any pain from this defect...
But I hope our babies can overcome this and that we can help them grow into healthy newborns!

harperashleyn · April 2015

That is EXACTLY how I feel!

Did they say she could come early? I'm 24 weeks & my next check up is Monday. @tylery

tylery · April 2015

@harperashleyn the doctor mentioned that depending how my baby is growing that I may or may not have to be induced. (Hoping I can just wait for my body to be ready instead of being induced..) I've had two appointments with the specialist and have another one next month to follow up. Hope your appointment goes well next week!

ginger8484 · April 2015

I just wanted to say sorry and bless you and the family. Maybe looking up support groups will help?

tylery · April 2015

@ginger8484 thanks for the support. I've looked up some info online from other moms who had children with this problem or even adults that had this when they were born. Not much I can do except listen to the doctors and hope it doesn't get worse

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