Gastroschisis

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. [:

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Hi, I am new to this site and I am 25 weeks pregnant with a gastroschisis baby.

The doctors have told me all along that I will be having a c section delivery in the best interest of the baby and that coincided with what i had read and made sense.

I have recently transfered to a new hospital where they are supposed to be more equipped to deal with the pregnancy but they are telling me I will have an induced natural birth. Has anyone had this and was it ok? I am very worried!

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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.

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My daughter found out she was with baby at a bad time. But decided to keep going and have it. At 18 weeks she had a ultrasound and her doc found problems. We live in a small town so we were asking to see another doc. Two days later (we don’t know what it is) she has another ultrasound and that’s when they tell us about gastroschisis. It’s amazing that a word like that you learn how to say and spell it real quick. So now this doc make a appointment with a children’s hospital that is 3 hours away from us to have more test.

At the hospital they took all their test and gave her the results and wanting her to let them know if she is going to keep the baby or not. She was smaller that is was suppost to be. Looked like there was problems with the brain and her feet looked wrong. It was like a bomb hit us. I could see my daughters heart braking right in front of me. How do you help someone when they have to decided something like this. And it didn’t help that one of many doctors that saw her say she should end it. Well, my daughter decided she was going all the way no matter what was wrong.

mind you she is only 19 years old. The next couple of weeks went by before a MRI could be done to check on how the brain was. When they were do, my grand baby had everything she needed upstairs(her brain) but they did tell here at that time her fluid was very low. So we were always solving one problem but gaining another. My daughter had so much stress on here but trying not to let it get to her for the sake on the baby. So now we are at 28 weeks. The doctors want her to go to 38 weeks. She has a ultrasound every week and her fluid is going back up. We keep waiting for the next bomb but it hasn’t come yet.

We have read everything we can on gastroschisis and that is how we found this web site. It has help reading from everyone here.

Thanks for your time helping other. I have learned to never give up!!!!!

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I’m typing this as my 13 week old daughter naps beside me.  I found out at my 21 week scan that my baby had a gastroschsis.  I am Irish and my husband is Scottish, but we both live in Toronto, Canada.  Before the delivery, we met with a high risk obstetrician, a neonatal specialist and the chief of general surgery at Sick Kids and they all explained what we could expect once our baby was born.  I went for regular ultrasounds as the obstetrician could see that her bowels were becoming more and more dilated.  At 36 weeks she had to come out as the risk of prematurity was less that the risk of the damage being done to her bowels.

I was induced and she was born at 11.58am on June 5th.  She was whisked away to the NICU where her bowels were wrapped in saline to be protected from drying out.  Waiting for the doctors to come and tell us she was stable was the longest hour of our lives.  She had to be intubated at 30 minutes of life.  She was 4lbs 9oz.  The transport team from Sick Kids came to take her in the early hours of the morning, but wheeled her isolette to my bedside so we could see her.  It was heartbreaking to see her and to leave her.

The very next morning we called Sick Kids.  The nurse told us we should have named her fiesty as she did not like being bugged.  I’m glad she had such fight in her.  It turns out she had her bowel, stomach, right falopian tube and right ovary ‘out’.  We were also told at that time that the reason the bowel was becoming dilated in utereo was because she had an atresia (blockage).  They put her bowels in a silo and we were told that once they pushed the bowel back inside and operated to close the defect, we would have to wait 6 weeks before they could operate to remove the blockage.  Only then could they start feeding her.

After 6 days she had surgery.  I was able to hold her for the first time just prior to her surgery.  That is a moment I will never forget.  The surgery was a success.  Slowly she was weaned off morphine and extubated.  I noticed that she kept stooling and when I told surgery, they said they it must not have been a blockage, perhaps it was a narrowing, so they sent her for a contrast study (they place contrast in her stomach and watch via x-ray until it goes through her system).  It made it all the way through - proving there was no blockage.  We were so relieved she wouldn’t have to have the second surgery.  She was started on continuous feeds and a bowel motility agent.

The weeks that followed were long and stressful with many ups and downs.  Iona (we named her after an Island between Ireland and Scotland), kept having ’spells’ where her heart rate would drop and her oxygen levels would de-saturate and we couldn’t figure out why.  She had almost every test in the hospital and were able to rule out what was not causing it, but we never found out what did.  Luckily she grew out of them (after 9 weeks).  She also kept having mysterious ‘infections’, but they were never able to find a true infection…she only showed signs and symptoms.  She really was a mystery baby that kept all the staff on their toes.  We were so nervous the first time she fed by bottle, but she did amazing.  However, she had a feeding study that showed she would silently aspirate into her lungs - meaning that she didn’t have a protective cough to clear her airway.  Maybe that was what caused her spells?  It was a long process of feeding, rejecting feeds and then having to go back on TPN.  I dreaded each time that happened as I had researched how TPN can damage the liver.  When she was finally up to full feeds by bottle (she was drinking my breast milk thickened with a product called SimplyThick), she stopped thriving and went for 2 weeks without gaining weight.  It turned out that Simply Thick was running through her system before her body had a chance to absorb anything.  We switched her to formula thickened with rice cereal and she has been steadily gaining weight since.

She was finally discharged at 11 weeks and has reached the 8lb mark.  She is so alert and has great head control and is as active as any normal healthy baby.  With the exception of some reflux and us having to give her injections for a couple more weeks (for a blood clot she developed in the NICU - a complication that sometimes arises from having a PICC line), she us doing amazing.

She has been through so much…we all have, but hopefully, we can all put it behind us.

PS her scar is minimal

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My Grandaughter was born  with  scary birth defect and lost all of her intestines but seven inches. We were told she might not live a month. But God blessed us and now she is 16 months old. She is on Tpn therapy, and she also gets Omegavin from Germany. It has not been approved by FDA here in the states yet. She can’t eat because of the lack of a stomach. She throws up a lot. But she is the happiest baby you could ever meet. Please if there is anyone else out there that knows something about  life span for this , Please contact me at iaabac1@aol.com Thank you Shelia

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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.

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“A long journey, many bumps, many problems.. it was a long wait, but totally worth it..”

I’m seventeen years old and just less than a week after my 17th birthday I found out I was pregnant, on December 13th, 2007. I was surprised. Shocked mostly. The hardest part was telling my parents and everyone else. I was scared for my life because I didn’t know what I would do and I didn’t know how to take care of a child, even a baby. But I didn’t think anything else would be worse than be pregnant at 17 and I also didn’t think there would be anything more harder than telling my parents about it. But, on March 2nd, 2008 I found out at my Ultrasound that there was something wrong with my baby. They found “abnormalities” in my blood, a lot of TPN. They told me that there was either a problem with the baby, I was having twins, or I lost her. When we had the Ultrasound, that’s when we found out. My baby had Gastroschisis. We saw her little intestines out floating by her belly button.. I was scared, and unsure about what I was just told. I was confused, upset, mad and frustrated.. Everything started going downhill from there. Just a month before I found this out, me and my boyfriend broke up. Too many problems in the relationship, he wasn’t ready and he decided it was best for him to leave me. I was left with nothing but hoping for this baby to come out strong.. she was the only thing that was keeping me going, staying in school and keeping a part-time job on the side.

After being 6 months pregnant, my boyfriend and I finally started working things out and slowly got used to me being pregnant and prepared ourselves for this baby to come. On July 18, I was called to come in to be induced. I was sent home after a few hours and started getting contractions, but they stopped. Then on July 21, I was called to come back to get induced again, but no contractions and was sent home again. Finally, on July 23, I was called to get induced for sure. I had really harsh contractions and stayed the night in the hospital but they stopped around 2 the next morning. On July 24, they decided to put an IV in my arm to make the contractions come faster. About 4-5 hours passed and the contractions started to come, not so bad. But when from 6-8:40 the contractions got too much for me that I had to take Epidural for the pain and was fine for the next few hours. On the morning of July 25, I started to feel the contractions and the pressure. From the 23rd to 25th, I dilated from 1 to 2 to 3 to 5 to 6-7 then to 9. By 6 in the morning I couldn’t take it anymore and the doctor told me it was almost time and to let her know when I needed to push. I kept complaining that it hurt and the contractions were getting worse, and they realized that it wasn’t the contractions but it was actually her coming already.

Then it happened. 37 weeks, 6 days, July 25th, 2008, 7:50AM, 6 lbs. 13 oz. A baby girl was born. I saw her for a second and then she was sent to the next room to cover her bowel and intestines. An hour later I was able to see her before they brought her to the NICU. She didn’t need any breathing tubes, she was breathing all on her own. All I saw was the top of her head and part of her face, and one of her eyes open. I got to touch her head, but I didn’t get to see her look at me or kiss her face. I was still too weak to move and I was lying on a bed right above her head. The surgeons told us they weren’t sure how long it would take to put back her bowel and intestines, it would either take one surgery or two. Then she was sent to the NICU.

Around 7PM that same day, my boyfriend and I went to see her. We didn’t think they finished her surgery because they said they would do it later that night. But when we saw her, she had no intestines out, nothing. They told us that one surgery was a success and it was all inside her. What a relief! She was just resting and recovering.

On July 26, we went to see her again before I finally left the hospital. She was really swollen and looked in so much pain. She had a needle in her head, on her arm, her leg, so many wires.. It was so painful to watch and I couldn’t stand watching. They were telling us how it all depended on her recovery and it was all up to her to stay strong and fight while they helped with more fluids and everything else..

Today, July 27, we went to see her again. And this time, she looked so much better! The needle in her head was gone, the swelling went down to minimum and they slowly took away some fluids. They said she was doing better and she’s doing good. I finally got to touch her for the second time, this time I got to feel her head, her cheeks, her arms, legs, feet, tummy, everything. I saw her eyes open, and then one of them opened just looking at me. I knew she was fighting to open her eyes after being so swollen, and she finally did for a short amount of time to look at me and her dad.

Honestly, this baby is a blessing, a miracle. They fight so hard and stay so strong just to stay here with us. I was worried for over 4 months about her Gastroschisis, but after only 2 days, I’m so relieved that she’s so strong. The doctors and surgeons these days are amazing. I just know everything is going to be fine, and things will always be fine when you pray and have faith.

“It was ALL worth it, and we’re going to stay strong.. just like her.”

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Hello, I thought i would join this website as i wondered if there were other people registered on here with the condition……. I was reading some of the other posts saying how people have found out in advance about their baby having the condition and how worried they are about how they will live a normal life or the size they will grow to.

I am just letting people know there is nothing to worry about as i was born with no warning to my parents that i had gastroschisis, as technology wasnt quite as good in 1983/1984 as it is now and the doctors assumed that i was a just a boy not that i had any medical condition. I was born 3 months prem and weighed 5lbs droping to 1.5lbs after one week. Not to worry though as this is sometimes normal.

I spent 3.5 months in hospital and had an amzing surgeon he pionnerd the surgery that they use today with babies that are born with the condition. I have lived a normal life i am happy and healthy i am now 5ft 9inc and weigh a normal weight and have never had anything hold me back. My parents decided for me not to have plastic surgery to cover my scars and decided it was my desicion. I chose not to have the op and think that my scars are part of me and who i am.

I hope i haven`t bored you and hope that i have settled any fears over small babies and people not leading a normal life when you are born with gastorschisis.

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Hi

I’m 20 weeks pregnant and my baby has gastroschisis. I’m currently living in Suffolk and go to Adanbrookes for specialist tests and monitoring. For a while I’ve been hoping to re-locate to Cornwall, and am now in a position to do so in the near future. I was wondering if anyone knows if there are any specialist units in the south-west, or what the general practice is for mothers living in this area?

Thanks in advance for any help!

Sarah

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