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

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?

Hi there,

My name is Nicole and Im 22 years old. I was born in 1986 with Gastroschisis, the defect was unknown to my parents or there physcians untill I was born. I had kinda a ruff childhood with being sick alot but not alot related to gastric functions untill about the age of 17, about then is when I started having problems with digestion,pain, bloating,constipation, all these really awefull, painfull, and uncomfortable things.  I felt like it would take my gut days and days to process anything properly, and that it was never doing a good job of it.   Soooo I saw a couple of physcians about my concerns and obtained the medical records and operative report from the day I was born as sort of a guide to what really “went down” on the day.  Come to find out that I had a defect with the stomach, pancreas, duodenum, colon, and the small and large bowel, all outside the abdominal cavity.  I gave this information to my physcian and they did some tests like a barium swollow to make sure the malroation of the bowel had been corected properly and there were no other internal concerns. the study showed that everything did indeed work “satifactory” was the word they used, but that it just took forever. They did say they belived there were some fair amount of abdominal adheasions that could be causing all these types of symptoms to come and go, and recomended plastic surgery to revise the scar and to take a look at the adheasions.  So I had that done when I was 18 and I felt a little relief after the surgery but not much. So now I’m 22 and still dont feel just right, I believe Ive done what I can and wonder if there is anyone else out there like me who has experienced these same types of issues with this defect later on in there life.  I feel strange not knowing whats going on inside of me it dosent feel like I think it should, and Im sick of being obbsessed about it !?!? I do watch what I eat and excersize regularly but nothing seems to help, ive seen at least 5 doctors  and they tell me that everything should be fine.. but it dosent feel fine !!

Is there anyone out there like me ??

I found out at 12 weeks pregnant that harry had gastroschisis and then the roller coaster of emotions started . Trying not to worry was hard every day i cryed and it really took its toll on mine and my partners realationship, Being happy that i was pregnant but allso the unsertantiey of whever harry would survive. From the 12 week scan i was sent to st mary’s hospital Manchester 3 days later were i had another scan at this point it was  explained to me about gastroschisis and what would happen through – out my pregnancy . The Doctors at st Mary’s were helpful and frank they were straight to the point and did not give any false hope . They simplyy told me every gastroschisis baby is different. On the 8th July i was induced at st Mary’s the birth was extreamly quick and Harry was born at 6lbs i saw harry for a few seconds and then he was taken up to special care. Shortly after i was brought pictures of harry and spoken to by the surgeon . The surgeon told me and Jordan that harry bowl was completely out it had a skin around it so they did not know if it was alive and that harry was on the survive end. They explained to me that he would be going to theater that day to put the bowl in a silo bag in a attempt to get the bowl back in . Day by day the bowl went back in and when harry was a week old the bowl was back inside his body. Harry stomach went softer and he was started to be given some milk see sawing we the tpn . When in hospital harry got an infection in his line however this is not uncommon . At just under 4 weeks old Harry was discharged . Harry is still having the occasional wash out but it is not uncommon for babies with this condition. I am now just hoping that he stays strong and keeps well.

Well I was about 11/12 weeks when I found out that my son had gastroschisis. It was my 2nd ultrasound but for some reason when the doctor let my fiance and I know, we weren’t scared. I had seen many birth’s on the discovery channel with children born this way so I didn’t ever worry much. All they did on the show’s was perform surgery on them right away to put the intestines back in….well it wasn’t until about 33 weeks when I found out what could actually happen and that’s when I cried.

So back to my story. My pregnancy was pretty besides the morning sickness that lasted till about 5 months, the heartburn I had to take meds for, the UTI I had to get shots for and the pre-term labor I underwent. At about 32 weeks my fluids starting running low and the baby’s growth rate began to slow down, all normal w/ gastro. according to the docs. At about 34 weeks I was put on bed rest because unknown to me I was having strong contractions only detected by my ob when I went in for an NST. I had hoped for a normal labor but little one was still breech at 36 weeks and my docs wanted me to deliver already so a c-section was schedule for 2/13/08. He weighed 4lbs 14oz and was 17in long.

When my son was born I never got to see him I only heard his cry in the other room and knew he was okay. He went straight into surgery and thankfully they were able to put all of his intestines back in. A few hours later I was wheeled in to go see him, something I vaguely remember because I was still somewhat drugged. That same day he was taken off the ventilator because he was breathing just fine on his own. His replogle stayed in for about a week and a half. They waited another 24hrs after it was taken out and he was then started at 4cc’s. He stayed at that for 24hours and since his stomach digested it well they then bumped it up 2 more cc’s and continued doing that every 12 hours. Throughout his 29 day stay in the ICN he continued to progress greatly. He was given a suppository only twice a few days after his 1st feeding and after that was having bowel movements on his own. By the time I brought him home 3/13/08 he was up to 60-70cc’s. He had some spit up problems at the beginning as well as minor acid reflux but after about a month  those problems had cleared up.

He is now 4 months old weighing in at 14lbs and is 24&3/4in long. The pediactric surgeons said that at 1yr old he will have to have another surgery to attach his stomach muscles. Anyone else told this btw? Oh yeah & he has no belly button.

Hi Everyone. My name is Kelsey and I live in the NY area. I recently had a baby with gastroschisis and am now for the first time looking at the information available to parents on the internet. I am so thankful that I did not spend much time looking at the information available on the internet, as so much of it is scary and would have only worried me more. I thought it was important to share my experience with other parents who are expecting babies with gastroschisis and let them know that your baby will be okay. I first learned that our baby had gastroschisis when I was 12 weeks pregnant. I remember the hearing the words birth defect about my baby and feeling like I could not breathe. It was a very scary time. For the remainder of my pregnancy I was seen on a weekly basis by a high risk doctor at New York Presbyterian Hospital. I was scared, but I also remember how great it was to get to have an ultrasound every week and see our little girl!

Our daughter, Ryan was born naturally at 37 weeks and weighed 6 lbs. The delivery was without any problems and aside from the gastroschisis Ryan was a healthy beautiful baby! She had the first of two surgeries within a few hours of her arrival. After her surgery she was transferred to the NICU where she received excellent care. Yes, it was very hard to see our baby hooked up to so many monitors and with tubes up her nose and down her throat. Those first few days were very hard as we could not hold her and I felt so helpless. As the days went by she continued to improve. 5 days after her birth she had her second surgery to put the rest of her intestines inside and close her tummy. 9 days after she was born all the tubes were removed and we could finally hold her. It was amazing!! Each day she continued to make progress and the dr’s gradually increased the amount of milk she could eat. I remember the first time she tasted milk – the look in her eyes was priceless. Ryan drank a few cc’s and let out this big sigh as if to say now that’s what I have been waiting for! Each day we would celebrate the increase of milk she could drink and how many times she had pooped. I never realized the small things would become so important. Ryan was released from the NICU 24 days after she was born and is doing great. She has had one follow up appt with the surgeon and he sees no reason for her to have any follow up appointments aside from her regular pediatrician visits. She does not have a belly button and has a small round scar about the size of a pea on her tummy. She is now 3 months old and is a normal healthy baby!

I just want to assure all the parents who have learned that your baby has gastroschisis that your baby will be okay. Yes, every situation is different and I am not a dr, but having gone through everything I am confident that your baby is in excellent hands and will receive the best of care and be at home in your arms before you know it!