Gastroschisis

I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

i am happy to email anyone personally. email me at sleney@hotmail.co.uk

sherry sleney

Derringer was born on Nov. 24, 2007. I found out that he had gastroschisis when I was about 5 months pregnant. When I found this out I was terrified.

I didn’t know what to do and I thought the worst was going to happen. After a couple of visits to the doctor they said that everything would be fine and that they would have to do one surgery when he was born because there was only a small amount of his bowels that were out.

After I got that news and did a some research on the condition I felt a little better. My pregnancy went great I had no pain or sickness. After the 8th month my son decided to come early. I went in the hospital thinking I was going to get a c section because that is what was discussed with the doctor and that is what she thought was best for me. Unfortunately things didn’t go as planned when I got to the hospital I was there for four days before I was fully dilated. When that moment came the doctors told me that I would be delivering naturally. I was so scared but in the end everything went well.

When my son was born I seen him for a second and then they took him off to do his surgery. Later that night the doctor told me that more bowels were out than they expected and a lot of it was dead. They ended up having to remove most of his bowels and they kept him in the hospital for a couple of weeks. They then decided they wanted to do a STEP procedure on him to lengthen what bowels he had left.

The surgery was successful and after awhile they began trying to feed him. When they did that it didn’t go so well. He began vomiting all the time. After a few more tests they told me that a part of his bowel was getting kinked up causing him to vomit a lot. It’s been 5 months now and my son is still in the hospital.

They now decided to wait on this last surgery because they believe he is going to need a transplant now. There next plan is to send him home on his TPN and wait until he is two so that he can then be evaluated for the surgery. I really don’t know what to do because at the beginning I was reassured that he would be fine and know I’m being told he is going to need a transplant. Is there anyone else who is going through this.

Hi my name is julie,

I have a son who at 5 month of pregnancy was diagnosed with gastroschisis, he is now 2 and a half yrs old.

It was so scary at first when we found out the news, we were in the hospital for over two months and we were so lucky because at our first surgery we were done, all the drs said it was God taking care of us because they had never seen a baby with this condition do so well.

Eric will be 3yrs in August 3 of 08, and he eat, play runs like a normal kid. If you want to chat about our experience email me.

I am seventeen and just recently had my first child. It will be an experience that i will never forget. My child was supposed to be born April 27 2008 but gastroschisis made other plans. On Wednesday Febuary 27 i went into the hospital to check the babies heart rate. I hadn`t felt any movement for over 24 hours. The nurse had a look of panic on her face when she couldnt find a heartbeat.

I knew right away that he had died.

They then took me to the ultrasound room and proclaimed that they could not find a heartrate and my son was presumably gone. I was in complete and utter shock. Just last week i was looking through adoption profiles to give my son the future he deserved and now he will never have a future.

My mother was there to support me the whole time. I was then admitted into the hospital right away. I was induced by taking a pill every 4 hours to send me into labor. I was put on morphine drip and i.v after 10 min. Everything around me was happening so fast.

I was not prepared for this to happen that day. I wasnt prepared for a normal delivery either i had planed on having a c-section. I was in labor for over 24 hours till Finally on the 29th at 1:30 i started delivery. It took all of about 7 min till he was out.

The only medication i had was morphine. Once they cut the cord and took him to be cleaned and wrapped it finally sunk in that he was gone. I cried so hard i was hysterical. My mother and my sons father were in the room at the time. I got to hold him all wrapped up in a blanket afterward and his hand and face was the only thing i wanted to see. I just wrapped his fingers around my index fingure and held him. I couldnt believe that he was gone. I had loved him so much.

The afterbirth would not come out because it was so early. I then had to go for a DNC where they remove the afterbirth surgically. I had lost half my blood volume in delivery and during surgery.

When i came back from surgery his father was gone, and he was also taken to the funeral home. His father had left me at around five months into the pregnancy and then not even a couple weeks after that he was already dating someone else. I did not figure the second part out til the morning after delivery when i was still in the hospital he told me. I was getting a blood transufion and filling out a death certificate. I couldn`t believe it. I then stayed in the hospital until Sunday and was released to go home.

Now i feel alone. I sometimes wonder why god chose me to have this heavy burdon. I never did anything wrong. I followed all the rules never even coming around 2nd hand smoke because i wanted everything for my child. I watch as other teen moms smoke everyday and i become very bitter. Im not ashamed that i am a teen mother. I did nothing wrong. But i am ashamed that i am clumped together with people who dont take care of themselves or their child.

I am not irresponsible and i am not immature. I just feel cheated. I know i was too young to give him everything a baby needed, and i wish i could have given the couple i had picked out a child. Even if hes not with me as long as i know that hes living a normal life like every other child i would have been happy. But i didn`t even get that. The doctors gave me no reason to fear this. Every visit i went to all my doctors made the same comment, that he was so active and moved so much.

I named my son Aiden Ray Delvallee

I will always love him -Devon

Hi i’m 19 years old and have a gorgeous little girl called macie pink. she was born on 25th sept 07 with gastroshisis. i found out on my triple test results that she had this condition. i was so worried at first and thought nothing but bad thoughts, i researched everyday about it and started feeling a bit better about it. i had scans every 2 weeks at my local hospital and at the hospital that was delivering ny baby.(addanbrookes)

i was meant to be getting induced at 37 weeks but macie decided to come early at 36 weeks by emergancy c- section. she was 4lb 6oz and had her operation 2 hours after birth. it was a scary experiance but i knew she was in safe hands. the surgeons were brillant and when i got out of recovery i got wheeled into intensive care to see macie she was on a venterlator for 1 day and stayed in the for 1 week then moved into special care for a longer 3 weeks. macie couldn’t have milk until she had a poo which took 2 and half weeks.she started on 1 ml of wilk every 4 hours and was put down her tube in her nose, and went up to 20ml every 3 hours and so on…

finally we got transfered to our local hospital and was there a further 2 weeks. it was a very long and stressful time for us but we’ve got through it and macie is 5 months now weighing 11lb. she so precious and so brave. her scar is hardly noticable.

so to all you mummy’s 2 be with babies going to be born with gastroschisis its really not that bad u must be strong for your little 1s! take care x

My husband and I had a beautiful baby girl born on November 9, 2007 with gastroschisis. It was a long hard journey, but she is now home with us after 52 days in Chidlren’s hospital. This was a very difficult time and we had good days and bad days. One thing that was really hard for me was that someone else was constantly taking care of my baby and making important descisions in her life. It was very hard to leave her and go home at night.

She came home on December 31st and is doing great! She’s eating well and going to the bathroom regualrly. She does have a lot of gas and grunts very often, but otherwise she’s a very happy healthy baby! A miracle child! And we love her lots!

I have read the stories about people in their 20’s that have survived this condition and since I have a daughter that has this condition I would like to know if there have been any women who have had gastroschisis and then grown up and had a baby of their own. If so please let me know how that went for you. I know my daughter is still very young, but of course I want her to be able to have children of her own someday.

I also want to encourgae all those moms out there who are wondering “what did I do to cause this”….no one really knows…so stop blaming yourself.  I know in our situation I was 26 years old (not that young) and I have never used drugs and I did not take any over the counter medications when I was pregnant or before I knew I was pregnant, and I don’t smoke nor am I around smokers while they are smoking on a regualr basis. No one really knows what causes this condition. Sometimes bad things just happen, so please don’t waste time blaming yourself.

My daughter Sophie was born in April 2006. She was diagnosed with gastroschisis at my 12 week scan and the roller coaster began. I find it hard to believe now but we discussed terminating the pregnancy, such was the fear of this condition we had never even heard of.

Sophie was born 7 weeks early. I started having contractions and they tried to delay them for 4 days, finally deciding to go ahead with a C section.

Like any mother, I cannot really convey the emotion of overwhelming love I felt at that moment. But the hard part was just starting.

Sophie was operated on the following day but had complications and proceeded  to have 3 more operations over a 4 month stay in hospital. She contracted infection after infection and 3 months after she was born she developed such a serious one that she nearly died. Those 4 days in intesive care were horrific. We saw other babies pass away as we prayed for ours to live. We even had her baptised incase she never made it. She did. Thankyou God. Maybe those daily visits to the hospital chapel and tearful pleadings helped sway him. Whatever the case, I am now in his debt and will always be.

A month after that time in intesive care, Sophie came home from hospital. July 21st 2006. I cried my eyes out with happiness on the journey home and I will always swear that she looked at me with the most loving gaze I have ever seen, I took that as “We made it Mum”.

Sophie is now 20 months old and a bright, happy, mischevious little soul who is our world. She had some diet issues for the first year but these have all been ironed out and she is now a normal toddler with a normal appetite! Her scar is not nice, but this is a very small price to pay for her life.

I do not envy anyone at the start of their journey with gastro and I hope my story does not scare. I just had to be honest about the emotional journey that we had to travel to get where we are. But I tell you today - It was worth every minute to have our daughter in our lives.

Lots of love and best wishes.

Kx

My daughter Erin was born with gastroschisis in 2002.  Her father and I were completely shocked, as we were both healthy and not at all high risk.  My doctor had no idea how to handle this defect and referred us to Perinatal clinic.  That week before the appointment with the specialist was the worst of my life.

The internet was full of horrific stories, and one pro-choice website described this condition as a reason mothers should be granted late-term abortions, that the child was sentenced to a short, painful life.  The misinformation I found was incredible.  I was barely able to function, wondering if my baby was in pain, and what I could have done differently prevent this.

Lucky for us, the specialist put or fears to rest, and assured us that with careful monitoring, and timing the birth properly (after the lungs were developed, before the intestines became too damaged) our daughter had a great chance at a normal life, was not in any pain, and there was no way to determine why this occurred.

My daughter arrived 4 weeks early.  Her intestines had begun to dilate (a sign they are becoming damaged by amniotic fluid) and I entered the hospital to have my labor induced, only to find I was already in labor!  The surgery went very well, although basically all of her intestines were outside of her abdomen, they were able to get them all back in again.

It was intimidating and hard to bond with her, she was my first child, and I was afraid of hurting her.  The nurses seemed so competent and knowledgeable, and I felt so uncertain that I would just sit by her side, often afraid to touch her for dislogding her tubes or bumping the respirator.  I think it may have been a mild case of post partum depression, because I remember feeling awful because while my daughter was beautiful, I didn’t feel that instant bond so many women describe, and it was intensified by my fear of touching and holding her.

After just 23 days, Erin came home, and then everything changed.  Without the nurses and doctors looking over my shoulders, I relaxed, and learned how to care for my baby.  She built up much scar tissue in her abdomen (she also had kidney surgery at 5 months, unfortunately she had kidney defects as well) and was prone to constipation and vomiting, and a bit slow to hit developmental markers, due to all the time in the hospital and being a bit early.  As we bonded, I realized how blessed I was, to be a mother to this spirited, beautiful girl.

Today my daughter is 5, and in kindergarten.  She is completely normal aside from still being prone to constipation.  She is so smart, loves to “help” with household chores, cut out pictures from magazines to make collages, and read whatever children’s stories she can get her hands on.  To anyone facing this issue now, with a pregnancy or a newborn still in the hospital….I know how lucky I am, and my daughter is….I pray you willl be just as lucky, so 5 years from now you feel the same joy that I do every day.

My son Matthew was born at 34 weeks and wieghed 3lb 15oz at Bristol St. Michaels.  I was 20 years old and scared. Matthews gastroschisis was bad he had to have a blockage taken out when he was 3 weeks old.

He suffered from an extened abdomen for a very long time .He has chronic lung diease and every time he got a cold or flu we were back in intensive care the amount of times we were told that ‘He won’t make it through the night’.(famous last words from the doctors!)
Matthew finally came out of hospital 8 months later he was back and forth to the hospital for a while.

His chronic lung disease is handled with inhalers. He was diagnosed with amyoplasia last year, which means he has limited movement in his shoulders, arms and fingers. But i am glad to say that i am the proud mother of an extremly livley, healthy, intelligant and cheeky boy of 6 years old!

Devin was born around two months early with an intestinal atresia caused by Gastroschisis. He has been living with Short Bowel Syndrome since he was two days old, had four major surgeries to try and fix his intestines and is now in the process of being listed for a small bowel and liver transplant. We were living in Germany when we found out that Devin would be born with Gastroschisis. We were told that it would not be a big deal and that he would be in the hospital only 4 to 6 weeks and there would be no long-term medical issues… At the most maybe two surgeries to fix everything and put it all back where is goes.

I SO wish that was the case! The military gave us the choice to stay in Germany and have him in a German hospital over three hours away from where we lived or pick up and move back to the US to have him. We picked to go back to the US and the military moved us to Tripler Army Medical Center in Hawaii.

It was nice for all of a week..At only 32 weeks along in my pregnancy and only being in Hawaii for 1 week I went into labor. I was put on meds to try and stop the labor for almost two day when we were finely told that they could not stop him from coming. All 4 pounds and 19 inches of Devin was born at 0337 on Oct. 2, 2006 Monday morning after only 9 minutes of pushing.

I will never forget his first cry! All I saw before he was taken away for his first surgery was he was a blond. At two days old I had not seen him yet and he had already been thru two major surgeries. After his second surgery his doctor came in to my room to tell me that “He will not live and if he does he will never be a normal child ~ He needs an intestinal transplant.

We are flying him to Seattle Children’s next week.” (I will NEVER forget a single word of what that doctor told me as she walked in my room.)  I had not even seen my little boy yet and I was being told that he would not make it. So we went from thinking at the longest a two month stay in the NICU to being told that he would have a very short, painful life. After his second surgery he had lost all of his small intestines but maybe 25cm and half of his colon. And was dilated to over three times the normal size.

Devin was flown to Seattle Children’s on Oct. 13th and had his third surgery on Nov. 4th (to make his bowel longer and not as wide). It seemed to work at first, but only a week after surgery he had dilated right back out and was not able to take any rate of feeds. After that happened, talk of transplant was brought up and the work up was started right before Thanksgiving.

But that was all put on hold until they could try the S.T.E.P. again in another three months.From Nov of ‘06 to today he has had a countless number of blood transfusions, line infections (blood infections), tummy infections, blood clots, ICU trips, UTI’s, PICC lines and Broviacs removed and replaced, and two Lipid overdoses. March 13th Devin had his fourth surgery (another S.T.E.P.) in hopes that this one would work and he would not need to be placed on the transplant list. It was working and everything was looking wonderful until he had gotten his latest line infection last month.

He had seven different bugs in his blood, two in his urine and a temp of 105.2. The ER doctor told us that if Luis had not woken up to check on him, Devin’s temp would have climbed so high that he never would have woken up that morning. Right after the infection was cleared and he was starting to look good again Devin started to stool from around his G-Tube. No blockage was found, but they did find that his small bowel was starting to dilate back out again. He now has a GJ-Tube in hopes that that will help things out a little while Devin now waits to be listed for a small bowel and liver transplant.More than half of the US has NO idea that small bowel is a largely needed organ for donation.  Many children die every year waiting for this organ that never comes because no one knows that it is needed let alone transplanted.  I have added some links for more info on these subjects if you would like to know more.Please pass the word and help save a childs life!  Even just some one knowing or talking about bowel transplantation and the Donate Life campaign can give a child a second chance.

• http://www.seattlechildrens.org/
• http://www.wcox.com.au/gastrosc.htm
• http://health.allrefer.com/health/gastroschisis-gastroschisis-repair-series-3.html
• http://cpmcnet.columbia.edu/dept/cs/news/research/2006_step.html
• http://www.regence.com/trgmedpol/transplant/tra09.html
• http://www.caringbridge.org/visit/devintoledo
• http://www.caringbridge.org/visit/jaycealan
• http://www.unos.org