Gastroschisis(gas.tros.chi.sis) Support and Resources

Hi my name is Maria, I am 20 years old.  I first found out that my baby had Gastroschisis when I was about 15 weeks pregnant through my first sonogram.  I was devastated because I had never heard of anything of its nature and I was like how am I going to go home and say this to my mother.  My boyfriend and I were told by the doctor that this was something that was reparable and could be fixed but that if would could not handle it we were free to have an abortion.  My boyfriend immediately told me no.  It is my first baby first pregnancy and I was not about to have an abortion the baby was almost 4 months. When I was about 5 months pregnant they had told me my baby was a boy. We later came to find out that she was a girl.  Through my whole pregnancy I had a Doctor check me regularly the visits started to become more and more regular to make sure everything else was in and nothing was dragged out along with the intestines.  My doctor told me that she would be there with me throughout the whole pregnancy.  Towards the end I found out she would be the one to deliver my baby which made me feel much more confident and calm.  On Saturday, September 19, 2009 I began to have contractions but they were far apart.  I had called my doctor and told her and we joked around and she told me that if the baby would be born that to try and aim for before Sunday morning, I guess the baby heard her and took her advice.  On Sunday, September 20, 2009 I had contractions at about 10 mins apart.  I was anxious and I couldn’t sleep which was not normal being that throughout my whole pregnancy I did not have problems sleeping. Something that was rare and something in me just kept telling me to get up which finally I did.  When I did I called my doctor she told me to get there and when I got there I had lost all my fluids.  I had to have an emergency cesarean.  My daughter was born at 9:36 she weight 5’5 and 17’1/2 long.  As soon as I heard her cry I started to cry. I got to see her for just a couple of seconds and they quickly took her away to take care of her.  They took her away and place her intestines in the silo to protect her intestines.  The surgeon then told me that her intestines looked good and nothing had to be cut or anything like that.  The first couple of days in the N.I.C.U were tough because I wanted to hold her and I just wanted to take her home.  She got her 2^nd operation to put all the intestines in on September 25^th 2009 and the operation was about two hours long which made me worry but the surgeon then told me that the operation was a success.  Now we are just waiting for them to start feeds and hopefully she will be home soon.  Her intestines have began to function she has had two small bowel movements but they count .

Baby Lilly decided to arrive by emergency c-section on 11th June @ 4.23am weighing 5lb 12oz. 

She is absolutely gorgeous!! 

They whisked her away as soon as she came out, I got a little peek before she left.  I got to see her a few hours after her operation and she had a silo pouch and looked extremely swollen and puffy which they said was from the drugs to paralyse her.  Everyday she looked so much better.  She has been given a long line and is still on morphine etc.  But she was taken off the ventilator today, although she will be back on it Friday when they do the closure operation.

She’s a little fighter and a little squaker at the moment!!  I feel like i’ve known this little girl for ages and it’s not even a week.

It is jusy so worrying.  Not knowing what to expect and not being able to help in any way. 

The first time I left hospital for a few hours to go back home I cried all day coz I didn’t want to leave her on her own.  The nurses here are brilliant and I know she is in the best hands.

I am now staying in accomodation at the hospital but will be going home on the weekend which I am dreading coz I know I will be so upset.  We will be coming up every day to see her but I just hate leaving her.

Did you all feel the same?

My 14 yr old daughter was born with gastroschisis 2 mths early through emergency c section. She came home after 5 wks and was doing great.After time she had trouble with constipation and had to take lactulos to soften her stools. When she was five her school friends noticed she had a scar and started asking questions. I asked the teacher if it would be ok to take photo’s of Lauren as a baby to school to show the children how sick she was and what she had been through. This turned out to be a great thing because she was geting a complex as nobody else in her school had been born with gastroschisis. We did approach the doctors about cosmetic surgery as Lauren has no belly button they said when she hits teenage yrs they will start consulting us about cosmetic surgery. Over the last few years i noticed Lauren’s scar has pulled inwards like its being sucked into her stomach. Now Lauren has a new problem that has arisen as she is having problems stretching and playing some sports in school. We have been to see a consultant who has said the scar tissue in her stomach has fused to her stomach muscles,thats why she cant stretch out properly. Has anybody experienced this?

Hello! My name is Jackie and i wrote an entry awhile back. It contained a picture of my husband who is a marine and me next to him. We were expecting a baby girl on Oct. 26,08. She came early on Sept. 28. The doctors thought a part of her intestines were swollen and didnt want the rest of her intestines following the same suit so i was induced Sept. 26 and she came 2 days later. I delivered vaginal and the delivery was very successful. My daughter weighed 4lbs 11ounces and was 17 inches long.

I was able to see her a couple hours later and her intestines were in a silo. 7 days later all of her intestines were back inside of her tummy. She did have a bit of jaundice and it went away quickly. She had a tube going down her tummy to remove bile and she had a tube to give her oxygen. She had no problem breathing on her own but they wanted to keep it in just incase. She was receiving TPN and they monitored if she was pooping and peeing right. She didn’t poop for quite some time which is normal because it takes awhile for the intestines to wake up and start to push the poop down. After awhile she was given breast milk slowly.. and they checked to see if she was having bowel movements. Once she did they would feed her more and increase the cc’s she would take in. She started to poop more and was slowly taken off the machines. I was told she did very well for a gastro baby and were surprised at how quickly she recovered.

My daughter was in the hospital for a month and she was able to come home Oct. 24,08. I’m so happy she’s home and we’re able to be with her. Her belly looks wonderful and her wound is shrinking and healing nicely. She’s slowly gaining weight and is doing great. I’m so glad everything went well. [:

Found out our daughter had gastro at 18 weeks. She was born at 36 weeks 6pds 3 oz. We found out 1 month before she was born that our local pediatric surgeon was not taking new patients. We had to get our baby at birth or immediatley after to Unc which was 3 hours away.  Fortunately she had no intestinal damage.

All of her intestines were out and a small portion of her stomach. We were told by the doctor at the local hospital all of her intestines were dead and she wasn’t going to make it. They transferred her to Unc and the surgeon there examined her intestines and come to find out she had stooled in utero and her intestines were black not because they were dead but from melconium.

They put her intestines in a silo and pushed a little in at a time for 7 days and then she was closed. 7 days after her surgery she stooled which happened to be mothers day. It was the best present I could ever been given. POOP!. Now we knew her bowels were working and we could feed her. The green bile no longer came out of the ripogal tube which they had been suctioning out since she was born. The first day I ever got to hold her was on mothers day. Due to being intubated and all the tubes I did not get to hold her at birth.

They wheeled me in to see her before they took her to UNc and she lay on the table making sucking motions with her mouth. So beautiful.Feedings went slow at first. Only 30 mls for a long period of time. Then they decided to put a feeding tube down to help speed things up and get her off of her tpn( which can cause liver failure, jaundice, and any iv has risk of blood infections).

We got to a point where we knew her body could take a full feed and we thought we’d be going home soon but come to find out the breast milk I was giving her she was allergic too. The gastroschisis masked the milk allergy. She was dumping and having white watery stools and malabsorption. They said babies that didnt have intestinal loss did not have this issues and they didnt know.

The milk intolerence had went on for so long that here body produced so much gas it couldnt pass thru her intestines and she came down with NEC. Its where air gets trapped in the intestinal wall and can cause infection and sometimes surgery required to remove damaged intestine. So feeds were stopped and they put the ripogal tube back in to decompress the stomach. After 7 days of antibiotics and and huge tube down her throat they decided to restart feeds.

The ripogal tube being in her throat and no fluid passing thru living her throat dry and sphincter open she began to reflux. She would not eat because of the burning in her throat. THey started prevacid which seemed to help with the burn but she still spit up. The time she spent working on feeds the filter broke on her tpn and she came down with a blood infection which required a lumbar tap and medication.

Finally after all that NIcu decided that she would never take by mouth what she needed to because she would reflux as soon as she had 30 mls in her stomach and quit eating. We put in g-tube. We never thought our baby would need one of these. We finally got her home. Most of her feeds she takes by mouth and we only use the tube for continous feeds at night and to give medications . Sorry this is so boringly long but I wanted anyone with a gastroschisis baby to really know. I was under the impression before she was born we would have surgery and take her home if her intestines were fine.

I knew if there was damage there were other complications. I guess I was really disapointed that she had a milk allergy. I feel it was the cause for all the other problems she had. I seen other babies even with intestinal loss go home before we did. It was a little unheartening to see these other babies go home before us. I was happy for them but I thought it would be us. We expected her to go home around 8 weeks and we were in the nicu over 20. I wish everyone the best who has a child with gastroschisis.

It is a very emotional battle sometimes but there is a light at the end of tunnel. Our beautiful baby girl is finally home with us and we can love on her everyday.  ***Our baby is currently almost 5mos old. I would like response from anyone with older children with gastro. I’m curious when to start solid foods and how they handled it. Also anyone with some insight on any problems their child had as they got older.