Anyone know anything about the birth defect gastroschisis?

Our daughters head is also very very small. Only in the 5th percentile. With gastroschisis, I know growth retardation is quite common which could very well be why her head is small. She is very small in general. BUT, I know small heads are associated with chromosome problems as well. I feel like there are so many “markers” that our baby has that indicate a chromosome problem. Im just hope I’m wrong. :(

Sorry, last question. Has anyone had a child with an isolated cleft palate? Can you tell before and after surgery that the baby had a cleft palate? Or is physcial appearance only affected with cleft lip/palate?

I do not have personal experience with it, but a friend of mine does. Here’s a support group she has http://community.babycenter.com/groups/a30535/gastroschisis

Years ago though, my SO at the time had a daughter born with Spina Bifida. She had numerous surgeries and problems. She never was able to talk, she had a tracheotomy, we fed her four times a day via an NG tube. Every night we hooked her up to a sleep apnea monitor so that we could be alerted when she stopped breathing. When she was three the doctors gave us a brace in which we could stand her up, and she hated it. Her lower half did not develop much, and when she was four, she left us. I cannot advise you in this. I cannot say that I would keep the baby no matter what. Jamie suffered horribly and constantly. She couldn’t cry out loud, but she could shed tears. Please look into all the material you can find. Educate yourself. Bless you.

@casheroo , thank you, I will check it out. @Trillian , I am sorry to hear about Jamie. It saddens me so much to know a child had to suffer. :( Thanks for your response.

I am so sorry that you and your spouse are going through this ordeal.

My thoughts are with you – thankfully we can make a choice about these things, but what a heartbreak either way. Read and study and ponder and discuss, but go with your heart.

I’m also very sorry to hear that your family is going through this. It’s hard to imagine what I would do in the same situation, but there are things I would want to know and consider first.

I’d ask my doctor what the best and worst case scenarios would be. I’d learn all I could about treatment options, and talk it all over with my SO. I’d find out as much as I could about what life would be like for (and with) a child with these disorders. My husband and I would have to consider our other children, and if we would be able to care for them and meet their needs as well. Would be financially able to provide care for the baby, possibly for many years, and still be able to feed, clothe, and educate our older children? What will the insurance cover, and what are we responsible for? I know it sounds harsh to consider money at a time like this, but I do feel it’s best to be prepared for every aspect of life with a severely disabled child.

In other words, I would need a bit more time and information before coming to any kind of decision. At 22 weeks, I don’t know if I could abort. I certainly wouldn’t judge anyone who did, but I think I would be more inclined to let nature take its course. I don’t know what the margin of error is on those tests you’ve had or the ultrasounds, but I would also wonder, “What if the doctors were wrong about the extent of the defects? What if the child could have had a happy and relatively normal life after surgery?” I don’t know to what extent you can opt out of treatments once the baby is born. If I went ahead and had the baby, but it was immediately apparent that no amount of care and surgery would give the child a happy life (I don’t say “normal,” just a life free of constant pain and suffering), I’d have to consider asking the doctors to just let the baby go. Keep him or her comfortable, say goodbye, and let nature take its course.

Nothing about it will be easy, and I am truly sorry that this is something you have to worry about. My thoughts are with you and your family.

Info for you, but you’re better off talking to your physicians than people on Fluther
http://www.nlm.nih.gov/medlineplus/ency/article/000992.htm

http://kidshealth.org/PageManager.jsp?dn=familydoctor&lic=44&cat_id=140&article_set=20805&ps=104

I worked in the area of genetic malformations, but as a research analyst not a clinician. I have nothing to offer but my empathy for your anxiety and uncertainty. I know experts in the field in Canada but specialists near you are in the best position to keep you informed about your particular situation.

I know you face difficult decisions and I hope you get all the advice and support you need.

Dr. Lawrence

I’m so sorry this is happening! My thinking would centre around what kind of pain levels she would have. I’ve seen families coping with this and it’s heartwrenching. Support you either way.

I will add one thing, though. If you decide to terminate the pregnancy for your own health you need to act very quickly.

Don`t panic there is help. I run a site specifically for parents new to gastroschisis and those including who have grown after being born with the condition. There are over 500 of us on the site: www.gastroschisis.co.uk.

Here is a link to some information on gastroschisis titled Obstetrical and neonatal management of gastroschisis: “link”: http://www.uptodate.com/online/content/topic.do?topicKey=pregcomp/15408&source=related_link#H13". This link is from an evidence-based, peer-reviewed information resource that I subscribe to so if it does not work, please email me at ptarnbsn@yahoo.com and I will email the information to you. Bless you. I know your heart is aching.

Learning you are expecting, then getting the diagnosis of gastroschisis can cause such a roller coaster of emotions. My heart goes out to you and your family.

Your fetus’ heart might appear to be “out of place” because the intestines and organs are growing outside the abdomen; malrotation and shifting is not uncommon. Placement of gastro babies internal organs are often different than those that develop “inside”.

Typically gastro babies with even a small amount of intestines “out” will have difficulty breathing initially because the abdominal cavity is smaller than it would have been had the abdomen grown/developed with everything “inside”. The lungs have a hard time expanding in cramped quarters.

Also, gastroschisis causes the AFP tests to show as positive for Spina Bifida. Gastro babies usually do not have other birth defects.

My ggson was born with gastroschisis. After the initial diagnosis, on one of the many follow-up ultrasound exams, the written report indicated there was also a malformed nose. When questioned we learned the ultrasound tech had placed the arrow in that location. The arrow was misread by the doctor as a birth defect. (That was one of the many hairpin turns in our roller coaster ride.)

When selecting medical professionals/facilities, learn the number and outcomes of their direct experience with gastroschisis births and follow-up. All medical professionals are not created equal.

Also, even the best doctors sometimes have different opinions. Because of that, I recommend parents learn as much as they can about the condition and treatment.

You may also want to talk with one or more pediatric gastroenterologists with gastroschisis experience: http://www.naspghan.org/aspModules/PublicLocateDoctor/PublicLocateDoctor.asp

Our little one was born around 36 weeks via emergency c-section. Gastro babies often come early. The mother is usually given a shot during a specific period to help the babies lungs develop should delivery be early.

Our guy weighed 4 lbs 4 oz. Closure was done in stages. He was kept in a medically induced coma until closure was complete. TPN feeding was done initally – TPN feeds are hard on the liver. (Advances have been made, but you will want to learn more about this issue because of the exposed liver.)
Eventually he could tolerate Mom’s pumped breast milk and specialized formula, but still had to be tube feed to get all the needed nutrition.

After approximately 1 month in the NICU he was released. There were a couple other admissions in following months and he had some liver problems. Part of his nutrition was still done through a g-tube and kangaroo pump. There were multiple formula changes. Many doctors visists. In spite of all that he was a happy baby.

During the first year or so he had in-home physical and occupational therapy as well as feeding therapy. That was done so he would meet traditional milestones for his age and not fall behind.

You may read hundreds of stories by parents. No two cases are the same. Some will sound like horror stories. Yet, 90% turn out ok. That doesn’t mean all are easy.
Unfortunately, it also means not all cases end well. Some babies don’t make it, but 90+% DO!

While our guy was hospitalized we did our best to have a family member with him as many hours each day/night as possible. Learn what the equipment does and what the readings should be. Nurses are the heart of the NICU, but they are human.

If you continue the pregancy, learn as much as you can about gastroschisis, from both medical sites and support sites, “the NICU experience,” procedures and complications. You may not need it, but it will help you ask informed questions and evaluate the care your baby is receiving from each provider.

I would suggest you put together a notebook and take it with you to each prenatal visit. Write down the questions/answers, tests, results, formula names, medications etc. Continue it throughout the care path. You never know when the information may be needed. The info you have may not be available in medical records and you can’t always get immediate access to medical records.

Take LOTS of PHOTOS, with date stamps, and include copies in the notebook. There are times changes will later be notice in photos that weren’t obvious when you see someone each day.

Today we have a smart, happy 3 year old bouncing around. He is the joy of our lives.

There is a gastroschisis support group on yahoo groups for families; the UK gastroschisis site, and several others. Additionally there is a new non-profit organization forming to focus on gastroschisis support/resources in the USA. You can learn more on the Facebook page for Avery’s Angels NPO Funding Gastroschisis Research & Support. When the website is done it will be at http://gastroschisis.org

I’m sending warm thoughts your way.

Hi. My name is Angela. && I have gastroschisis.
You’re child will not have a regular belly button.
Ther intestants will on the outside.
&& He/She will aprox. be in the hospital for about?
Uhmm. 3 months.

Unfortunately, my baby died 2 months ago when I was 6 months pregnant :( but thanks for everyones input!

oh my, I’m so sorry for your loss.

Thank you.

Hi my name is Kasey I have a son named joshua Xavier, he is now 3 years old, born with Gastroschisis…I am involed in a great website and page through facebook called Avery’s Angels NPO….it’s a gastroschisis support group….look us up we can help answert you questions listen to your stoires and try to help however we can, or you can contact myself at kradel810@gmail.com or the founder of Avery’s Angels at meghanhall07@gmail.com

@Xaviersmama07 Ah, I know all about that group from my friend. Good info.