My Daughters Unborn Baby Has Gastrochisis

I am sorry to hear this. I have not had any experience with it, but I googled and looked up this website.

http://www.chw.org/display/PPF/DocID/34307/Nav/1/router.asp

Hope this helps.

I have personally not gone through it, but my neighbor is a pediatric surgeon who has conducted many of these surgeries. He speaks about it often as he just had a case a few weeks ago. The procedure is pretty fascinating and may differ depending on the baby's specific medical condition. I hear though that babies who go through this have a relatively normal uncomplicated development. The best thing to do is to consult with the surgeon on what to expect in terms of feeding and sleeping. Again, every case is a bit different so it's important to get accurate information based on your grandbaby's situation.

I don't have a child who has Gastrochisis but I do work for a Home Health, for medically fragile children. Gastrochisis requires a long period of hospitalization depending on how long it takes for the doctors to expand the abdomen cavity. It's a long process but baby will be fine in the end. Have faith in your new grandchild and pray for strength. You'll be in my prayers.

If you find a real good tonal (not physical) chiropractor he/she may be able to help further. I have seen some amazing internal and external obstacles such as gastrochisis be helped. I go to one in the Woodlands, Texas named Dr. Ky Carlson and my whole family has seen miracles happen. I took my baby in 3 days old and he helped heal her digestive track and some other problems (ex. projectile vomiting). My kids and I all go regularly now. He keeps the colds down to a short duration, no chronic ear infections for a year now and no more allergies (no more pills for any of us) and my baby now has regular bowel movements naturally.

Hi, my daughter was born with gastroschisis 4 and a half years ago. I had never even heard of it before they told me she would be born with this condition, so I can imagine what you and your daughter are going through right now. My daughter was born at 35 and a half weeks because that was as long as we could wait before it was no longer safe to carry her(too much amniotic fluid). Right after she was born, she had the corrective surgery and stayed a little over seven weeks in the hospital. I was not even able to hold her until three days after she was born, and then it was only very carefully, because of all the tubes and wires hooked up to her. That was extremely difficult at times. Also during her hospital stay, she got an infection in her heart due to the tubes they had to insert into her after surgery. She also had to have a blood transfusion, as a result of that. It took her almost four weeks to have a bowel movement, which was a major feat for her at this time. I chose to breastfeed, but had to pump for almost the whole time she was in the hospital and just freeze the milk for her, in hopes that she would be able to take it later. She was given all her nutrients with a feeding tube, and I could not even attempt to breastfeed her until the docs thought she could handle it, which was when she was a little over a week old. Even then, we had no success. She was so ready to eat, but she immediately threw it back up every time we tried. This went on for weeks and we thought we would have to bring her home with a feeding tube, and but thank God, with all the prayers, she was finally able to handle the milk right before she got to come home. Even when we brought her home, she was still on three different meds for her stomach and it was an extremely difficult adjustment from the loud noises of the hospital to our quiet home. We tried everything we knew to do, and still for months she cried ALL NIGHT LONG, with nothing bringing her relief and OFTEN had projectile vomiting no matter if I breastfed her or gave her formula. I am not trying to scare you, and I do know that each baby is different and it also depends on the severity of each case. I am just sharing my experience because I have been there as a mother and these are things I wish someone would have told me. The docs and everything you read about the subject will tell you that after they have the surgery everything will be perfectly fine and normal, and no big deal. Not always true! My daughter also has strabismus(crossed eyes)and I believe it is linked to her medical problem. I know someone else who had a daughter that was born with gastroschisis, and her daughter also developed strabismus around the same exact age. I think this is more than coincidental, and so that is also something to watch for. We noticed my daughter's at about a month and a half old. She just would not uncross her eyes so she has worn glasses and had surgery to correct it since she was two months old. Going through this was extremely trying at times and God is the only reason we got through it! I always wished there were other people out there to relate, so I hope this really helps!!

I am a mother of a 23 year old who was born the same way. We did not know until she arrive. She survived just fine, it takes a little patience, but it will be ok in the end. The baby cant eat right away, but I found breast milk to be the easiest on her sensative stomach. After that she went on soy.
She would throw up often because she was so hungry, she would get upset when I would try to burp her. Which caused more problems because she is taking in air when she screams. But as they grow it will slowly get better. I do not feel like her sleeping was affected by the gastrochisis. What I found as she grew, was her stomach would hurt when she ate something and it was not all the time and it was not the same food, so I would feed her things that were easy to digest.
Today she is a beautiful young mother herself, she is a small person, but she is a ball of fire and has come to terms with the scaring and the differences she has from others.
So, dont dispare, you will be blessed with a beautiful baby, who some day will give the world much joy.
God Bless,
T. Schach

Our son also had gastroschisis when he was born! I was 17 at the time. We found out at about 5 months along. The great part was that we got to pick our surgeon, GI doc, and pediatrician... and we loved all of them! I was glad for the opportunity, because some surgeons we interviewed made us very uncomfortable, and I did not want them operating on our newborn baby. Our son was born 5 and a half weeks premature, and delivered vaginally (so it is very possible). Each gastroschisis case is different. Our experience was probably more drawn out than most, because he had other complications. He did have a feeding tube, colostomy bag, and central line for IV feeding. You guys will be overwhelmed with information about what "could" happen. Just find doctors you are comfortable with, take notes at every appointment, and trust in God. While it seemed like his recovery would be forever while we were in the heat of things, I look back now and it was a blink in time. He will be 9 this summer and is amazing. Someone told us at some point that if God told you to pick a birth defect for your baby to have, you should pick gastroschisis, because there are no lasting effects. The only way you would know now that he had it is his belly button scar, and he just told everyone that it was from when he got into an alligator fight!

I have not had to deal with this myself...but I LOVE watching Discovery Health...and they have a program called Special Deliveries. It is all about pregnancies with problems. I have seen this condition on the show SEVERAL times...so if you try to catch a few days in a row...I am sure that you will be able to see a baby born with it...and what it looks like...along with the surgery afterwards. It is pretty interesting to see. I wish you and your family all the best with the new baby! :)

B.,
My daughter (who is 7 now) was born with 1 rt pelvic kidney. This was found while I was still pregnant. We were told this was the only problem and it was normal. We just needed to have her checked out after she was born to make sure that 1 kidney was o.k. Well, I'll make the story short, when she was a month old, she was having her first surgery. She was born with MalRotation and Pyloric Stenoisis and nobody told us this, or even tested her for this. The Malrotation is something that should have happened during pregnancy, her intestines and organs are on the outside of her body, and at a certain time, they go in where they are supposed to, well hers did not, they went in, but not where they were supposed to. This is why she only had 1 pelvic rt kidney. There wasn't any room for her kidneys to develop and so she only had one. All of her intestines and organs were all jumbled up inside her little tummy. Her intestines were twisting off. She could not keep any formula down or anything and she cried non stop. We went to pediatrician after pediatrician, I even had one tell me that I was just over analysing her because I was a new mom. We finally found a pediatrician that sent her to a childrens hospital (a month after she was born). They found that she had Pyloric Stenosis (which is more common in boys. This is when the stomach muscle closes off and the food or formula can not go down. That is why she was throwing up her formula projectal!! Not because of acid reflux like some tried to say. When they went in to fix the Pyloric Stenosis, they found the MalRotation. They took her appendix out because they said she did not need it. After the surgery the surgeon told us he did not know how she had survived a whole month. He said she should not have been having a bowel movement because her intestine were almost completely twisted off. He said is was only God! When he went in to do her surgery he got chills, he said it was God doing the surgery not him. At this time, we were told she would be fine. No one checked into why, this all happened, or did any further test. We had not idea.
A year later, we found out that our little angel had a chromosome disorder. This is what caused all of her problems. They told us that we needed to be tested, and we were, and it was not genetic. They told us horrible things that could happen. They said she may never walk, or talk. They did not know how long she would even live. This was devistating to us. Needless to say, only God knows his children!! She walks and talks, granite it took longer, but she is doing it. She is developmentally delayed, but that just makes her more special.
If I were your daughter, once her baby is born and they do the surgery to repair the baby. Have the baby tested for any other genetic problems, not that anything could be genetically wrong (because our daughter was not born like this because of us), but because that way, if they know immediatly, they can take care of any other problems right then! We wish that we would have known this, our little girl would not have suffered for a whole month. 9 times out of 10 when these things happen, there is a reason. In our case, it was a chromosome problem, I hope your daughters baby does not have any other problems, I just wanted you to know, because we had no idea.
The internet is a great source to find out information, I wish I would have had it when my little girl was born!!
I will pray for your daughter and her baby. Tell her that it isn't easy seeing your baby go through that type of surgery at such a little age, but it will save her life. Just love the baby and let him/her know she is there.
In some case of MalRotation, like my daughters, all of the intestines and organs are on the outside when the baby is born. My daughters did go in, they just didn't go in right. If God had not put the Right Kidney in her pelvic she wouldn't have had it either!! We THANK GOD every day for our Angel. We also have a healthy 3 year old daughter!!
Good luck with your Grandbaby!! There is nothing more special than a BABY!!

My best friend Juli, has a 4 month old who had the same. I think I was more scared than she was. She did alot of research and found it helped comfort her.

Mason is doing GREAT now. The doctors were able to correct the intestines right in the operating room within minutes of the c-section being complete. He was in the hospital for about 8 weeks right after he was born, but got another infection and was put right back in. He was there for another 2 weeks on medicines and then continued to eat better and is FINALLY home! He is sooooo precious.

The best thing Juli did, the doctors say, is strickly breastfeed. It is eaisier for them to digest, therefor helping the intestines heal by not over working them. She stayed loyal to pumping through the night even with Mason in the hospital. It was difficult at first, but as time went by got way better. She is not STOCKED on breast milk!!

Good Luck! Let us know how things go!

Congrats on the grandbaby! :)

Hi B.,
I have not had a child with this but I am a pediatrics and neonatal ICU nurse here in Austin. My advice would be to encourage your daughter to ask lots of questions before the baby is born. Right now she is able to process information and will be able to learn a lot about her child's condition. After the baby is born she will be dealing with making decisions, be tired and hormonal. Ask questions of her OB, talk to the pediatric surgeon, if that is available. (My two cents on that is that Dr Meyer and Schlecter are the best pedi surgeons.)

Initially after the baby is born he/she will most likely be transferred to Dell Children's Hospital, unless she delivers at St. Davids in which case they may keep the baby in the same hospital. Dell is where they do most of the surgery on babies. Mom needs to be prepared that she may not be in the same hospital with the baby in the beginning. She will be asked to begin pumping breat milk to feed the baby and this will be very important as it is so much easier to digest. The baby will have special IV fluids that will provide nutrition until after the surgery (it is called TPN or total parenteral nutrition). The nurses will explain the other equipment and monitors that the baby will be hooked up to. Be sure and ask questions! :-) Other things to be looking for will be NG tubes (a tube thru the nose and into the stomach to remove gastric secretions and air so the gut does not have to process that) and possible central IV lines. There are different types, so they will explain that when the time comes, based on what is best suited for the baby.

Another question for the surgeon will be if the baby will have an ostomy bag. This is emotionally difficult for some moms and she will need time to prepare for this. An ostomy bag allows the partially digested food to bypass the remainder of the digestive system. It is basically a bag placed over an open end of the intestines (on the babies tummy) to catch the poop.

As far as emotional preparation for Mom, she needs to be prepared to possibly be separated from the baby, not be able to hold the baby for quite some time, and she will need lots of emotional support to deal with a very challenging situation.

I'm not sure if I answered your initial question about "feeding, sleeping, etc". Once the baby comes home from the hospital it will be on an every 3 hours feeding schedule and Mom will be trained to take care of whatever special needs the baby will have.

Again, the most important thing is ask questions....

I hope this is helpful and I will be praying for your family!

B.,

So sorry to hear about this, just so you know I will keep you and your family in prayer. May God Bless You.

B.

im sorry to hear about this. i know that it is stressful and scary. i am a neonatal icu nurse in the woodlands. initially, the baby will be in the NICU. it will depend on the degree of severity as to how long the baby's stay will be. after discharge, the repair will be complete and the baby will be a normal baby. typically they do very well and have no other issues.