Gastroschisis

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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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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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.

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Hi, my name is Jessica and my husband and I learned at 18 weeks pregnant that our baby had gastroschisis. They we’re unable to tell if the baby was a boy or girl due to all of the intestines and bowels in the way. Finally by amnio we found out our little baby was a girl.

They took Brooklyn 6 weeks early due to bowel dilation. She was born 4/27/01 at Baylor Dallas hospital weighing 5lbs 8oz.

She was on a vent for 1 day and spent 1 month in NICU until she could come home. Even though she has been hospitalized 7 times throughout her 6 years on this earth for pneumonia, asthma, rsv x 2 and influenza, she’s a happy, healthy, active beautiful girl.

We are currently having some issues with horrible constipation and her crying of stomach pain. She is on mirilax 1-2 times a day with not much relief. Today she had a CT scan to rule out obstruction or “kink” . She’s already had a scan a couple of years ago that showed malrotated gut and appendix up by the gallbladder but no obstruction.

This time the Dr. is more concerned because the miralax is not helping even when she was on it 3 times a day.

The CT tech came in in the middle of the scan today to call in the radiologist and said her stomach still had her breakfast in it from 7 hrs before and the barium was only through the small intestine, for her to walk around for 45mns to see if we could get it to the large intestine and they would rescan. Well when rescaned still no barium had moved.

We were sent home and now here I am stressing waiting for an answer. Has anyone else been through this with their gastroschisis baby or themselves? I wish I had found this board along time ago now I hope I can have some people to talk to that understand.

Thanks,

Jess

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My husband and I couldn’t be more thrilled to find out that we were having a baby. It was the most exciting time in our lives and to have our first born be a boy was even happier cause it’s exactally what we wanted.

I did everything a mother was supposed to do and then on the first visit that my husband couldn’t accompany me to an appointment I took along my mom.

Well we seen a different doctor than I normally did and he was great. He wanted to do a sonagram just to check how our boy was doing. Well he kept looking and not saying anything.

I was starting to get worried after 10 minutes of him looking in the same spot then he looked at me and said I believe there is something wrong.

Well he told us that he thought it was Gastroschisis but he wanted to send me to a specialist because we are from a small town and they don’t deal with that kind of stuff there.

The next week I went to a specialist who said they wanted to see me in their office in Albuquerque, NM next week.

Well my husband, my mom, and myself drove up to Albuquerque and the next day got horrible news. The doctor ran all kinds of tests, then she came in the room with me and my husband and said that it definitely was Gastroschisis and that we had a problem.

She looked at my husband and asked “Sir do you want your son?” My husband puzzled of course said “Yes, what do you mean?” She then told us that if they did not induce labor now he was going to die. My husband replied “Well yank his butt out then.” The doctor did an amnio to check the lungs of our son since I was only 32 weeks.

He was good to go and they began to induce me since they said natural labor is safer due to they don’t know exactally where the intestines are and they could cut them and hurt us both.

Our son was born July 26, 2000, he was 5lbs 3oz and 10in long. I got to hold him for a second on my stomach then they took him away. I tried to send my husband away with him but they wouldn’t allow it. It took several hours before we were allowed to see our child and I was so sad.

Finally the time came and we walked in to what we were not prepared for they didn’t give us all the details on how he would look. It took three surgeries before they finally closed him up and they had to put everything in different then normal that they had to remove his appendix also.

After 2 1/2 months I finally got to hold my child after they finally woke him and took him off the ventillator. There were so many close calls and the questions of you should start thinking about what is best for him and should you turn everything off. It was some of the most hardest descisions of our lives.

After 4 1/2 months our son finally got to come home. It was a back and fourth struggle to Albuquerque for the first year and a half. Many obstructions and kinks and just things not working right. After nine surgeries, several blood transfusions, and many hospitalizations, things finally started looking better.

Our son is now going on 8 years old and still has some problems with his stomach.  But all in all he is a pretty healthy kid and very happy. He loves to run and play football and do all the normal things any boy loves to do. I did have another child after him and was scared to death, but she was very healthy and didn’t have any issues with her stomach.

I only hope this story has helped someone and if you want to talk about it just let me know.

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My son was born in the National Naval Medical Center in Washington, DC on the fourth of February (Superbowl Sunday) by C-section at 34 weeks.  I was stationed in Germany when we found out he had this condition and after a lot of paperwork, my doctor at Landstuhl Regional Medical Center had me sent to NNMC to deliver..

I went in around 9 in the morning because Azriel had not moved in almost 24 hours.  Upon monitoring, they found that his heart beat was dropping dangerously during my contractions, and he was not recovering well.  I was told it would be better to monitor him outside of the womb and they would be inducing me.  They waited a few hours, gave me an epidural that did not reach my left side and had to be redone, and then decided a C-section would be best.

I was expecting not to be able to see my baby until after surgery, but when the surgeon we had met on a tour of the hospital came in to talk me, it was to ask if we wanted to let my little boy live or not.

Sometime during the birth process, the hole in my son’s stomach through which his intestines were protruding closed in on his bowel, cutting off circulation.  The bowel itself died, and as a result, the surgeon could either remove his entire lower intestine creating severe short bowel syndrome or just let him die.

My husband and I were both horrified and immediately told him to go save our son and quit asking stupid questions.

After about an hour, I finally got to see Azriel.  He was a little 4lb 6oz tube factory with a mop of wet, black hair that covered his whole head.  He was beautiful to me and I didn’t even look at all the tubes or the raw-looking cut across my little baby’s abdomen.  Me and my husband were both instantly in love.

After my short stay in the hospital, my husband and I “moved” into the hotel/barracks across from the hospital paying $30 a night waiting for paperwork for housing at our new assignment post.  We carried all of the flowers and “It’s a Boy” balloons out of the maternity ward and were asked by an innocent passer-by “Oh, where is the baby?”

Walking across the street three and four times a day to watch our baby sleep were the highlights of our days. In talking with our baby’s surgeon, we decided to allow him to reconnect his bowel (which had been turned into an ostomy, basically opening out of a hole in his stomach) to his colon to see if anything would pass through.  (Which went well, he pooped within days!)

Sitting down with specialists and surgeons also took up a lot of our time as we listened to our son’s options.  Depending on how well he did, he would be considered for a small bowel transplant.  We were told that since TPN would be his main source of nutrition for a long period of time, he would also be put on the list to receive a liver as well.

As the weeks went by, my son faced no real problems.  He came off the respirator within 24 hours of birth.  Maintaining a working central line in his arm or leg were difficult as he often pulled them out.  We watched him grown bigger and stronger, passing 5 lbs and working his way on to 6.  The breastmilk I pumped and froze tearfully, wondering if he would ever be able to drink it, began to be infused into his stomach through his G-tube, a small feeding device surgically placed in his stomach, and he hit a growth spurt that we were all glad to see.

After about 2 months, everyone (his GI specialists and pediatric surgeon and NICU staff) felt comfortable sending him home on TPN.  My husband and I were to be trained on his home pumps and in the mixing of his TPN.  Also, we were taught how to replace the dressing on his broviac (central line) and clean around his G-tube.  A week before he was to be released to a half-way facility where we would be monitored as we cared for him prior to him returning home, we noticed he was a little less active and seemed very tired.  We informed the nurse who said it was normal and not to worry.  The next day we were met by all of his doctors, who informed us he had a fungal infection; a fungus had attached itself and was growing on the plastic on his broviac.  Also, they had drained large amounts of fluid out of his stomach so they were no longer giving him breastmilk until they could do a study to see if his intestinal track was blocked some way.

This was our first setback.  He was treated for the infection, and the nurses began suctioning his stomach with a syringe from his G-tube every 6 hours.  After about 2 or 3 weeks, a nurse let it slip that he would be coming straight home, on the antibiotics.  We were exstatic and were finally told by the doctor that we would be “rooming in” in the next few days.

For almost a week we stayed with Azriel in a hospital room.  Every 6 hours we suctioned his little tummy and turned off his TPN to administer his antibiotic.  The nurses came and changed out his TPN every 24 hours.  On the last day, a nurse from the company who makes my son’s TPN pumps came and showed us how to program the TPN, Lipid, and medicine pumps.  On the 17th of April me and my husband put our little 7lb miracle into the carseat that had been waiting for his homecoming for months and did what we had watched countless other families do-carry our baby down the hall and out of the hospital.

In a blur, a home nurse met us at our home with a huge box of medical supplies which she explained the use of.  She watched us to make sure we knew how to change his TPN and then showed us how to add the vitamins to his TPN bag with needles.  The first days were hard; Azriel had no sleep pattern from his stay in the NICU.  He did not sleep at night.  We were up with beeping pumps, we were up draining bile out of his stomach, and we were up with changing out his medicine, but mostly we were up with a crying baby.  We got no sleep, and with both of us being active duty military, one of us had to report each morning at 0630.  Life was very hard.  We got frustrated.

On his first visit to his GI doctor at Walter Reed Army Medical Center, she told us that his G-tube was too small.  She did not have another one in the size he needed, so she gave him one that protruded 4 or 5 inches out of the cavity in his stomach while we waited for the one that is flush with his skin to be delivered.  He bled and leaked terribly.  When we got home, we realized that we could not drain him out of this one, and Azriel’s little tummy was getting full.  A call to the home nurse resulted in an ER visit.  However, as we were getting him ready to go, my husband caught his broviac on the wheel of the bassinette and pulled it completely out of my son’s chest. In a panic, we packed our very calm, very quiet baby up and rushed him to the hospital.

Azriel stayed at Walter Reed for about a week and was then released.  He was only home for a few days when he choked on his own spit while crying and stopped breathing.  We performed CPR on him like we were taught in the NICU until the paramedics arrived and gave him oxygen.  This resulted in another week-long stay and a swallow study which revealed that he could be fed orally as long as it was thickened with a special honey used to thicken baby formula so that babies do not swallow too fast and choke.  FINALLY I was able to watch my son suck down some breastmilk from a bottle.

Azriel is presently 9lbs, 4 months old, and waiting from the comfort of his own home for organs.  We will attempt the STEP procedure (hopefully) in the near future to try to avoid the transplant.

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I had no problems until just lately I started having servere stomach pains and I noticed that my belly felt like I had a ton of gas and the dr had me go get a ct scan and found out I had a incarsarated hernia and an upper intestine blockage! Stemming from my birth defect! I had this done last year!

Yikes now it can get scary with this kind of birth defect since Dr’s don’t know what they are going to get into until they cut me open! And with all the scar tissue and not knowing if all the body parts are in the right area, very nerve wrecking!

Luckly my Dr’s at the Universary of Iowa Hospitals did such a wonderful job on me when i was a baby all my stuff is in the places or there about! When I was a baby they put a mesh in me that the dr built up my stomach walls and I remember that when I was little I was preached about not getting hit in the belly area or I would Die! I had no stomache muscles to protect my inners.

Well I hope I helped a little I am now 35 years old and doing well! I am married to a wonderful man who dosen’t mind the scar at all and loves me for who I am !
Danyel

P.S. If anyone has this birth defect please email me maybe we can chat! I would love to meet sum people that I can relate to with this Birth Defect!
coolhippychic@aol.com
Let me know it’s about this subject or it may end up in trash! TY

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Hi, my name is Amber. I went through gastroschisis when I was a baby!

I am 14 now, and my life is wonderful!!!  I used to be made fun of when I went swimming, because of the scar on my stomach; I always wore one peices, but now all i wear is 2 peices. You get over it, and now I don’t care what people think about me ! My mom always told me that, “it doesn’t matter if people make fun of me, You’ll always have a story to tell !”

For all of the women having a baby with gastroschisis, and for all the kids that have had it, I am praying for you, and I know God will take care of you !!!

Love:  Amber

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My name is Kylie and I’m eighteen years old. I thought you’d be interested in hearing my story so you can learn about possible long term issues with gastroschisis.

My parents married young and my mom had me when she was nineteen. Since I was born in 1989, most pregnancies didn’t have ultrasounds done unless they were high risk ones, so my mother didn’t have one through out the pregnancy.

I was born a month early and was a natural birth so when I was born and my stomach was open with my insides coming out, I was rushed immediately to a children’s hospital. My mom only go to see me for a few seconds and didn’t even get to hold me. I was flown to the hospital and immediately went into a small surgery to secure my vitals. The organs that protruded were wrapped in gauze on top of my stomach and I had a small surgery every day for almost a month. They shaved what little hair I had and fed me through tubes in my head and my leg. The doctors told my mom that my surgeries were so difficult that it was like putting toothpaste back into a tube. I’m lucky though because my doctor ended up successfully separating conjoined twins later on.

I finally got to go home when I was almost a month old. I was born very small but gained a few pounds in the hospital. They thought there might have been damage to one of my ovaries but they can’t be sure. If so, I’ll have a narrower chance of having children. My scar on my stomach is vertical and is now six to eight inches long so I technically am known as the girl with no bellybutton. I also have three to four inch scars on my right leg from where I was fed through tubes.

Ultimately, I’ve grown to be a very happy, healthy girl. I’m a freshman in college and I’m living my life each day at a time. However, for the past five or so years, my stomach scar has had pains and the doctors just believe I have built up scar tissue and it wouldn’t be good to have to operate in the exact same spot as before. But other than the scar tissue, there’s nothing really wrong with me other than typical issues teenagers have.

My parents call me their miracle baby and I thank God every day still that I’m alive. To all you parents who have recently found that their baby will have gastroschisis or to the parents who have babies recovering, I’m a success story you can smile upon. I hope your children will grow to be as normal and healthy as I have.

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