Gastroschisis, an abdominal wall defect

A new study published this week in Obstetrics and Gynecology reports on the rise in the incidence of a birth defect called gastroschisis, an abdominal wall defect. The study was large, reviewing over 4700 cases of gastroschisis occurring in 15 states from 1995-2005. While the condition is still relatively uncommon, the number of cases nearly doubled in the ten year period (from 2.32 to 4.42 per 10,000 live births). The highest rates (11.45 per 10,000) proved to be in non-Hispanic white teen mothers. Women younger than age 20 were over seven times more likely to have a baby with gastroschisis compared with women aged 25-29. Why? We don’t yet know.

In gastroschisis, the baby has an opening in the abdominal wall, usually on the right side near the belly button. During pregnancy, part or all of the baby’s intestines come out through the opening. Sometimes the baby’s stomach and liver also may be outside the body.

The intestines and other organs float in the amniotic fluid that surrounds the baby in the uterus. The amniotic fluid can irritate the baby’s intestines, sometimes causing them to swell, twist or get shorter. As a result, some babies have lasting intestinal problems. Babies with gastroschisis usually don’t have any other birth defects.

If a baby has a small abdominal wall defect (only part of the intestine is outside the body), he will probably have surgery within 12 to 24 hours of birth. The surgeon will place the intestine back inside the abdomen and close the opening.

If a baby has a larger defect, however, the surgery may take place in stages. In some cases, the baby’s intestines may be swollen or the abdomen may not have grown enough to hold them. The surgeon may place the intestines in a tall plastic container called a “silo.” The silo is positioned over the opening in the abdomen. Over several days or weeks, the surgeon will gradually tighten the silo. This helps to push the intestines and other organs back inside the abdomen. Once all the organs are inside, the surgeon will remove the silo and close the opening.

While life starts for these little ones with what seems an intense ordeal, most babies with gastroschisis recover and develop normally. Some have feeding problems that last at least through early childhood but most eventually outgrow these problems.

More research is needed into the cause of gastroschisis. The March of Dimes has and is funding a number of grants on research involving abdominal wall defects and we will continue to look into the causes so that hopefully one day these defects can be prevented.

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23 Responses to “Gastroschisis, an abdominal wall defect”

  1. carrie caudill Says:

    My grandson was born March 3Rd 2013. Both intestines we’re out and took 7 days to go down. He spent.3 months at Riley hospital for children in Indianapolis. I have not as most people I know, ever heard of this birth defect. He has a hernia that Is large from this and will have it fixed when he Is about 2. This has been the most amazing and scariest thing in my life. What a miracle he Is as all babies born with this . Awarness Is important . Thank you for recognizing this defect

  2. Brianne Johnson Says:

    My daughter was born 04/02/2012 with gastroschisis. She has had 10 surgeries so far, all before she was 10 months old. She was diagnosed with short bowel syndrome after she had her intestines placed back into her belly. I am not sure what I have done to cause the defect in her. I wish that I could find out what had caused it so that I can fix it in the future. Her father and I love her with all we have. We were told at both hospitals she was admitted to that she is the happiest baby that they had ever taken care of that had a digestive issue. You would never know that something was wrong with her system if you didn’t already know or see her hooked up to feeds and tpn. She is our miracle baby and our little angel. We couldn’t ask for more. But, we look forward to finally knowing what caused her defect. Thank you March Of Dimes for helping to fund some much needed research.

  3. rio Says:

    Great article.
    I wish you would have been a bit more realistic though.
    2 out of every 10 babies born with gastro die.
    And most children do not outgrow things.
    If parts of the intestine are removed for whatever reason, that is for life. They don’t grow back.
    Our son is 20 and he still has issues.
    Kids are usually small for their age and a lot of times have no belly button.
    Both of these things while not serious cause them a tougher time in life.
    Maybe talk to a gastroschisis group and find out what really happens.
    Also if all of the bowel or a small part of the bowel is out does not make the decision about surgery.
    Its not really a hole, its not a hernia.
    The abdominal wall does not develop at all. There is a difference.
    Our son was full term and was 7lbs and ALL of his bowel was out yet he had surgery a few hours after birth.
    Followed by a 4 month hospital stay.
    Its the size of the baby that makes the decision when the bowel is put back in, not the amount of bowel out.

  4. Suzanne Says:

    When my son was born with gastroschisis, the scariest part was that no one at the hospital knew anything about it, and there was no one to talk to. For many of us, it means the world that March of Dimes is taking notice. Thank you.

  5. Caryl Kunze Says:

    Thank you for adding gastroschisis to your list of birth defects. My granddaughter was born in 2010 with this defect. Through Avery’s Angels, we had gotten a lot of support and information which was very helpful. My granddaughter is a very healthy little girl today and I am so happy that March of Dimes has it listed. Thank you again.

  6. Jodi D. Brock Says:

    THANK YOU!!!… This brings tears to my eyes… Our son “Mecca” was born almost two years ago with Gastroschisis… Our stay in the NICU was a VERY hard one, but we were BLESSED with an amazing Dr. & staff… He still has many feeding issues, which we are seeking help for via gastroenterology… BUT it has been & is still a very long battle in which there are not a lot of answers!!!… There needs to be ALOT MORE research done in this field, so that WE the parents have more answers… To me it seems that I learn more about unknown side effect & can relate to the issues of other Gastro babies via: websites & groups MORE than from actual Dr.’s. “RESEARCH IS NEEDED”

  7. Lindsay Says:

    Thank you for your comments. When the research we fund teaches us more, we will let you know. For those of you who have children still struggling with related issues, we hope you will see improvement over time. In some cases multiple surgeries are required and a perfect outcome is not guaranteed. Those cases are so very hard to accept.

    If you would like to connect with other NICU parents who may be facing or have dealt with a baby with gastroschisis, visit our Share Your Story community (http://share.marchofdimes.com/). You can write your own story and ask questions in our birth defects section. It’s a very supportive groups of parents. Best wishes to all of you.

  8. Abigail Says:

    My boyfriend Matt & I found out that our daughter Journi, had gastroschisis same day we found out she was a girl. So it was very, very bittersweet. Neither of us knew what gastroschisis was nor how to pronounce it correctly. I would never look online at any of it I just knew what it was from the doctor had told us. At my 35 week check up my doctor had decided I needed to go to I.U. hospital in Indianapolis. I was monitored there for a couple weeks. My amniotic fluid’s were too low (I had trouble with this the whole pregnancy) and they were afraid that Journi was under too much stress. Then when I was 37 weeks and 4 days I had a routine ultrasound and they decided then to induce me. At 37 weeks and 5 days (March 22, 2012) I gave birth to Journi Lynn she weighed 6lbs 4oz, she had all of her small and large intestines out, part of the stomach and liver, and a fallopian tube. She stayed in the NICU from the time she was born until April 3rd, on that day everything that was out finally went back in. They were then ready for surgery on April 5th 2012. She was able to come home April 13th 2012 over the coarse of being home about a month a umbilical cord hernia formed, her doctor decided to wait until around her 1st birthday to have another surgery to remove the hernia and form her a belly button. On February 7th 2013 she had her surgery and did excellent. This was the hardest thing Matt and I have ever been through and the most traumatizing experience what made it even more difficult was that he had to come back home which was 3 hours away from I.U. to go back to work. He works at the coalmine so it was 12 hour days 6 days a week, so I didn’t have much time to talk to him. Thankfully Journi, has had no problems at all with this she eats well and is able to digest well and she LOVES to eat! She recovered from both of her surgeries wonderfully. I never knew what a blessing could feel like until I had her she was so perfect and still is her little belly button is the cutest thing I’ve ever seen.

  9. carolyn Says:

    My granddaughter was born 2005 with gastroschisis. all of the bawl was out .she was vary small and still is . she had surgery 4 days after birth, the doctor really did’nt think he would be able to close her. she also developed a hernia, needed a feeding tube , 4 about 4 months. other than that she s been fairly healthy
    until today, she developed severe abdominal pain, from the scar tissue. now im worried about her again. she is vary tiny she only weights 40 lbs scar tissue does not grow vary well. im hoping march of dimes does some research in this area.

  10. Lindsay Says:

    Carolyn, I’m sorry to hear about your granddaughter’s struggles and hope her situation is rectified before long.

    The March of Dimes has invested over 1.5 million dollars in research into the causes of gastroschisis in the past few years. Hopefully, we will find answers soon. Our best to you and your family.

  11. Mackenzie Says:

    My boyfriend and I are pregnant with a girl Ava, we found out she had gastroschisis at 16 weeks. I am now about 32 weeks being seen weekly to monater the dilation of the intestine they say once it’s dilated 18-24 is when I’ll be sent to the hospital to deliver via c section. Last week I went it was dilated at a 12 this week they said it was 12-13 so it got just a little bigger. I’m starting to really get scared for everything and I am wondering if anyone has any advice.

  12. Carol Says:

    I was 27 and my husband 30 when i gave birth Our son on Sept 18, 2013. He’s been in the hospital for 134+ days and is going for his third surgery tomorrow. An abnormality was found around 12 weeks and was determined to be gastroschisis at 17 weeks. He was born at 33 weeks 4 days at 5 lbs 10 oz which all nurses and staff told us was an amazing weight. He had surgery right away where 20 cm of his intestines were removed, unfortunately the part that was removed was the part that absorbs the most nutrients and part of his large colon. He then could not eat and had to be on TPN for about 7-10 days until his intestines could be reconnected. During that second surgery he also received a ‘g tube’ . He receives allocare formula which is the most broken down formula. His stomach and intestines are so sensitive, we’ve only been able to increase him one cc at a time. Miraculously, he has not had liver problems from being on the TPN so long. My husband and I had hoped to bring him home today because he was doing well when they took the picc line out, however his weight started to deplete after a few days and he became dehydrated last night. As result, tomorrow he will be going into surgery to receive a broviac line and come home with it to continue receiving TPN. While it’s been a long, hard road and it was unexpected for him to have to receive a broviac, our son’s smile melts our heart. His fight and determination to get what he wants, which is usually his bottle of 10 ccs or to be picked up, inspires us. Through all of this, my husband and I remind ourselves that everyday will not be perfect, but everyday will have perfect moments, which tends to involve our son’s sweet, strong demeanor.

  13. Carol Says:

    I also credit the amazing doctors, nurses, and staff at St. Barnabas to his great well being and demeanor. They give the hope, courage and strength.

  14. Lindsay Says:

    Mackenzie – I’m sure this is a scary time for you and your boyfriend. The best thing to do is make sure you meet every doctor’s appointment, ask any and all questions you have (and there is no such thing as a silly question) and that you listen to your doctor’s advice. Glad to know you’re being monitored regularly. It sounds like you’re in good hands.

    We’re thinking of you and Ava and wish you all the best. – Lindsay

  15. Lindsay Says:

    Carol, you and your little guy have been through a lot! He sounds like a determined little fellow. We hope the surgery went really well today and that you will have him home very soon. – Lindsay

  16. Jessica Says:

    Rio, While I most certainly sympathize with your story, I don’t think it’s fair to say this article is inaccurate simply because it differs from what you are going through. I think everyone will have a different experience with gastroschisis. No two people are the same.

    Our son was diagnosed early in our pregnancy, but his intestines became twisted and they had to remove 60% as soon as I delivered – very unexpected and scary. One of the first nurses my son had told us that he would never eat normal, his intestines would never grow, and his life would be very difficult. I can proudly say that exactly 30 days after his due date when he went in for a surgery the doctors measured his intestines and they had DOUBLED in size! We were thrilled. I think it was very unfair for the nurse to handle our situation the way that she did. I understand preparing parents for what could happen, but I also see positives in being optimistic. This is a disorder that little is known of so it is hard to say exactly what one will deal with because everyone is different. I think this article already informed me of a lot more than I knew back in 2008 when we were dealing with this.

  17. Summer Says:

    My step daughter just found out during her gender reveal ultrasound that her baby has the abdominal wall defect. We do not know yet if it is the gastroscisis orthe omphalocele. However I have not found anything like this on the omphalocele. We are looking for support groups and would like to bet involved in raising awarness can anyone help out with additional information in regards to this? I am so thankful that I at least found this and that mar h of dimes is fighting for the cause!!!

  18. Sara Says:

    Hi Summer. Omphalocele is a rare birth defect that occurs in 1 in 4,000 —7,000 live births. It is a type of abdominal wall defect in which the bowel, liver and other abdominal organs protrude out of the abdomen and into the base of the umbilical cord. Surgical repair is performed primarily in stages, or after a period of waiting which can last several months. Omphalocele differs from gastroschisis in that the protruding organs are covered by the omphalocele sac. You can read more here: http://www.chop.edu/service/fetal-diagnosis-and-treatment/fetal-diagnoses/omphalocele.html. And if you have any other questions, feel free to email us at askus@marchofdimes.com.

  19. Farrah Lovell Says:

    My son was born January 8, 1997 and is now 17 years old. We had a wonderful doctor that performed his surgery. I am very honored to have him. My son has a slight almost no scar. It looks like a wrinkle included with the belly button they made him. He had a 45 minute surgery, was is hospital for 3 months and had had only 1 issue and that was a lil over a year ago. I wish everyone had the same experience I have. There is one question I have, not knowing the cause of his abnormality, is there a chance his child/children could be born with the same condition??

  20. Alexis Linear Says:

    My son was born 1-28-14 with gastroschesis entire small and large outside body. I was induced and he was born over 6 pounds. A small part was black so they put fluids and brought them back to “life” how doctor explained it. He was in hospital only little over a month. Since he has gotten home the incision had gotten infected but had nothing to do with intestines. He is now a very busy very happy 3 year old who eats a lot and poops just as much! We feel very blessed to have experienced such an easy surgery and healing. So for all those who are pregnant and are scared like I was…just know a lot of the times it goes very well with no problems in the future ! Good luck -lex

  21. Sara Says:

    Farrah–According to the National Organization for Rare Disorders (NORD), “Consistent chromosomal or genetic abnormalities have not been defined but reports have been made of multiple affected family members. The most likely explanation is that isolated gastroschisis follows multifactorial inheritance, such that multiple genes and environmental factors acting together cause the abnormality.” It may be helpful to consult with a genetic counsleor (http://www.marchofdimes.com/pregnancy/genetic-counseling.aspx) who can better explain you son’s chances to have a child who may be affected. If you have any additional questions, please feel free to email us at askus@marchofdimes.com.

  22. Sara Says:

    Alexis–thank you for sharing your story. We are glad to learn that your son is doing so well!

  23. Jamie Says:

    I found out my son had gastroschisis the day I found out I was having a boy. I was 22 and my first child. This scared me through ought the pregnancy and met with wonderful doctors who explained all the risks, even death. I was sent to the hospital directly from my follow up appointment for a stress test. At 34 weeks He was born on 1/27/2007. He was immediately taken to the children’s hospital where he had a “silo”, pick lines, breathing tubes, and eventually surgery. This was the hardest thing I’ve ever been through. He had a buddy next to him during his Nicu stay with the Same issue. I was surprised to know this happened as often as it does because I had never heard of it. He’s now a healthy 7 year old. He however did not get a belly button, they never gave us that option. He has a scar there. At times, it bothers him. I just wonder if there are other children that also didn’t get the belly button surgery or also wasn’t given the option? I know it’s just me, as a mom, worry about teasing in the future. It’s too late now, and I wouldn’t dare have him go through another surgery! Never thought I’d have belly button envy! Lol it’s nice though to see that there is a group of others, even in the same areas as me that have gone through the same ordeal with their child.

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