Gastroschisis

Updated on May 31, 2008
L.G. asks from San Diego, CA
14 answers

Just found out we are pregnant. They think we are at 11 weeks... still breastfeeding our daughter so a little hard to determine. Ultrasound discovered an abnormality with the fetus. They think it is 'gastroschisis'...a condition where the intestines never get back inside the tummy completely and end up on the outside of the body in-utero. Surgery to put them back in is done after birth. I have just begun research on this condition and was wondering if anyone had any personal experience with it or good websites for me to reference. I need info soon as we decided to have a CVS procedure to determine the possibilities of other abnormalities due to genetic disorders. I'm so worried about things... how sever is it? are there other problems? if so, what do we do? can we make THAT decision and live with ourselves??? I need advice!!!

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S.T.

answers from Los Angeles on

I'm going to tell you something about my own situation, many years ago, and I don't know if it will help you or not. My first natural child was born almost 50 years ago, when we were in Germany -- my husband had a fellowship there. Of course there was no such thing as ultrasound, although the doctor had wondered why my baby seemed so small. She had a condition called D-trisome, genetic, although not inherited. The syndrome included cleft lift and palate, club feet, no retinas (blind), deaf because of missing parts of the ear, heart defects, and on and on. Everyone was amazed that she lived and got to 6 pounds so we could take her out of the hospital and then back to the US. She died at home and in my arms when she was 2 1/2, peacefully, after a smallpox vaccination which had been necessary due to other circumstances. Although I have always regretted any pain she may have suffered, she enriched the lives of our family and friends and her influence lives on today in the work I do for disabled access. Her birth made any bit of smugness I might have ever felt about my other children's abilities and talents disappear. To this day, I ask myself if we would have chosen abortion if we had known. And to this day, I don't know the answer. As I said, I'm sure she felt some pain. So that was the downside, and if she had been able to speak, I don't know if she would have preferred not to have existed at all, rather than to have the life she did. So sometimes I think it is a selfish thought that I'm glad that she was my daughter, even for that short time, and that I think of her life as a blessing to our family and friends.

After you learn more, maybe you can make your decision based on what it means for your child's life. If it's just the one condition, it seems like a minor issue. If I had known what was in store and decided to abort, I think I could have lived with the decision, although I think our family might have been different, and maybe poorer, for it.

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R.H.

answers from Los Angeles on

With all my heart...Don't ever think about aborting your baby. Best thing to do is let GOD decide. Medicine and technology are so advanced today it's amazing what they can do. So my advice, from the bottom of my heart, is to keep researching and do all you can for that precious life that is in your womb, and let GOD make the ultimate decision. After all, HE is the one who gave life in the first place and is creating your baby fearfully and wonderfully. God has an incredible plan and purpose for you and your babies. He says to you, "For I know the thoughts that I think toward you, thoughts of peace and not evil, to give you a future and a hope."

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L.A.

answers from San Diego on

A hernia is not a life or death event. Gastroschisis is a hernia, a hole in the abdominal wall which allows some of the intestines to come out. After birth, surgery will be performed to repair the hole - problem solved. This is not a genetic disorder, it is a defect that is relatively easy to repair. It is not associated with other problems. Your baby is perfectly healthy other than this one issue. They will monitor you closely during pregnancy just to make sure that your baby stays healthy. The concern there is that intestines are not used to direct contact with amniotic fluid, but it is usually not a problem. This is all a part of motherhood. Problems arise and you deal with them in the best way for your child. You were looking into adoption, you said. What if you had committed to a birthmother only to find that something might be wrong with the baby? Would you opt out? Life is full of risks and none of us come with a guarantee. Not a one of us is perfect. Don't give THAT another thought or you will regret it until the day you die and feel guilty that you even considered it every time you look at your child. Skip the CVS, enjoy your pregnancy, and soon you will be a family of four. :0)

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C.F.

answers from Los Angeles on

L.,
I have no formal advice for you as far as medically. However, I will say that I will keep you & your family in my prayers. I believe God puts children in our lives and we should accept that gift regardless of how they may come. I'm not sure if you have a church you go to, but if you do I would suggest going to speak with your pastor/priest/rabbi/bishop...whoever your spiritual adviser may be. And if you happen not to have on, I'm sure anyone you choose to go to now will be able to help you greatly. I believe this desicion goes beyond medical advice and into the spiritual. Either way, I hope the best for you and your family and, again, will keep you in my prayers.

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V.T.

answers from Los Angeles on

Dear L.,

You have been blessed no doubt by having a child after so many years.
You have a tough choice to make, my friend has a son and had a daughter with that problem. The marriage suffered and now she is a single mother with many doctor's bills and has to work during the day and take care of her daughter, her son is always feeling left out and has issues. Talk to experts, there is a Doctor Samir Johna at Loma Linda Hopital and he is a real expert on gastric operation and he is invited to go over seas to show what he can do with these surgical procedures. check him out and see what he says, Good luck.

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J.P.

answers from Santa Barbara on

Hi L.,
As a mom of three, I can only sympathize with what you are going through. It is never what you plan for when you find out that you are pregnant.
My humble advice would be to get to a perinatologist in your area as soon as possible. They have advanced ultrasound with genetic counselors that can assess what is happening as early as possible.
I don't know where you are geographically, but the best place to ask who is the best in your city are the labor and delivery nurses at the hospital. They have seen these providers "in action" and can refer you to someone that can assess what the risk for additional anomalies are.

I wish you the best outcome.
Blessings,
Jen

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M.W.

answers from Los Angeles on

L.,

Sounds like your baby needs you to be strong and at peace more than ever. Just know that this is happening for you and not to you.

God Bless you. You'll be in my prayers.

M.

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S.C.

answers from Los Angeles on

A very close friend of mine (who is the most health-conscious person I know)had the same condition with her second daughter. You'll be happy to know, that she had surgery right after she was born, and is doing fantastic. She will be 4 in August, and you would never guess that there was anything ever wrong with her. My friend was told she'd likely need some corrective surgery later, but her daughter is doing so well, that she never needed it. She is a completely healthy little girl. Hang in there, if this is the only problem, then the baby will get through it and be totally healthy, and completely normal like the rest of her peers.

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A.S.

answers from San Diego on

As for breastfeeding and pregnancy, in general the new thought on that is that it's okay. http://www.askdrsears.com/faq/pr2.asp
Your doctors working with you directly can give you the best medical advice for your particular situation.

As for the actual purpose of your post, I hope you have people around you who can love on you and encourage you. I wish I had personal experience to answer the questions you have about Gastroschisis, but I do know this. Children are special blessings. I have a son with Sensory Issues, and a daughter with Cystic Fibrosis. Both require a great deal of work on an ongoing basis. It's hard, but I want you to know it's worth it. You will learn more from caring for this precious child than anything else in the world will teach you. And at the same time you may even teach your daughter how to care for people that are different. I wish you all the best as you research and make tough decisions.

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M.R.

answers from Los Angeles on

Dear L.,

Congratulations on another little miracle. Your baby is going to be fine. I know that what you are going through is frightening and takes the joy out of the experience, but you will look back on your pregnancy when your baby is safe and doing well and realize that everything was/is okay.
Doctors can do miracles when it comes to putting little babies back together. My daughter was born with a severe leg deformity. We didn't know until she was born. I know from experience that it can be difficult to bond with the baby because of the emotions and hormones involved- so prepare yourself not to feel guilty if you feel this way. It's not easy giving birth to a child that needs surgery..but I want you to know these children are very special and will teach you so much. We have been through two surgeries and as everyone will tell you, children are amazing and resilient! Much tougher than grown ups. You will be fine and it won't affect your family or your other child adversely. I have a feeling your CVS and all other tests will come back just fine. You know what you can handle and how you would want to live or not live life. Everything is going to be fine! You will be fine! :) Try not to worry too much. Just base your decisions on the CVS and don't worry about the gastroschisis. Doctors do this surgery successfully all the time.
Take Care.
M.

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R.F.

answers from San Diego on

L.,
I had a friend who gave birth to a son with the same condition. The delivery was a scheduled cesarean and the doctors were prepared for surgery within hours after the birth. He is now a very healthy 3 year old. This is not a condition which will affect the child for life (from what I understand). As for the breastfeeding. I became pregnant with my second child while still nursing the first. The one thing that you will need to keep in mind is that you are eating for three now and will have to increase your calorie intake. I would not suggest weening your daughter at this point, she is still a baby herself and needs that connection to you. I think I was about three or four months pregnant when my milk began to dry up on it's own. By that time my son was over a year and ready to stop nursing.
Happy Mothers Day =)

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K.E.

answers from San Diego on

L.,
Iam 26 years old and I went through this same thing with my son just over a year ago. Honestly I was a wreck.... But it ended up not being that bad. Nothing to abort over. My son was born and taken into surgery right after. Was in suegery for 2 hours and they had all of his intestines in side. Then he was in th NICU for 29 days. Seems so long but it was just a short time looking back. I had alot of Doctors appt. A couple a week from 18weeks of pregnancy all the way to 37 weeks when I delivered. I had the best Doctors in our area. Now he is 14 months and is healthy as can be. I look at him everyday and smile he is such a blessing. If you have any other questions feel free to ask. I had a friend that had a son born with the other abdominal opening. Had it was great just to talk to someone who had been through what you were going through. So if you have a questions feel free to ask. Im more than happy to answer. I just went trough it all so its all still pretty fresh. Hang in there everything will be fine...

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S.G.

answers from Las Vegas on

I saw this same thing on Discovery Health Channel a few months ago. They did the surgury on the baby when he was a few days or hours old. And he did fine! I don't know anytihng else about the condition, but I do know that the baby did great. However, the decision is 100% yours.....and whatever you decide, be confident in your decision. Don't let anybody influence or judge you.

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J.D.

answers from Las Vegas on

First of all, you need to stop breast feeing if you are pregnant. The baby in your stomach is not getting all the nutrients it needs. Stop breast feeding now!

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