Gastroschisis

hi, i have a little girl called Ebony leigh, she was born with gastroschisis. after she was born they put a silo on around her bowels for a week then she had her operation which was a succsess. My daughter is now seven weeks old and still in SCBU.

She just wont tolerate her milk and is only on 1ml every 2 hours and her TPN to keep her nutrients up. It just seems every one who i have read about or spoke to with babies that have the same condition have only been in a few weeks. Its really fustrating i just feel like im missing out on her. I was just wondering if anyone else felt the same way it would be really good to hear a reply
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I recently wrote a piece on my daughter, stephanie, who was born in june 1996.

She had Gastroschisis and was born at 38 weeks. She had her operation and treatment at Lewisham hospital in London.

I have noticed a few new parents on this website who are having a bad time with their news of diagnosis and treatment.

Please keep positive, it’s hard, I know. Gastroschisis isn’t as rare as it used to be 10-15 years ago and the treatment has vastly improved since then. Medicine is improving and the chances of survival rates with Gastroschisis babies are rising.

I’m sending with this post….a huge hug to you all.

Sherry Sleney x x x

My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.

He is now on the 75th centile and 14 months old.

However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.

Has anyone else had this problem?

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

I was born with gastoschisis , which has left me with no belly button and a massive scar , i was born prematurly (2lb) and very nearly died ! i am 17 and no different from anybody else now apart from various scars all over my body . I was just wondering if this condition would have affected my fertility ?? I was told that one of my ovaries were damaged ?? Can anybody else help me ??

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.

It`s been close on a year now since i set up this Gastroschisis iniative and it is time to take a closer look at the success and/or failures of the website.

When i initially set it all up my thoughts were along the lines of having a useful Gastroschisis resource for parents to be and existing parents of babies born with this condition.
Over the year i have developed it into an expanded resource encompassing research and development, a gastroschisis toolbar, videos, your blogs and at the very core of the site is your birth stories and experiences.

Having read so many at times heart wrenching accounts of the Gastroschisis condition it has given me a renewed enthusiasm to carry on developing the website further.

As i am writing this i have just approved the latest article added by Mel and her now 1 year old Daughter, Mel becomes our 148th member since i set the website up in May 2007 and reaching even the 100th member milestone seems like a double edged sword.

I am pleased that the website has reached out to so many but on the opposite to that i am saddened to think that there are so many cases of the condition.

Now for more good news.

The website in my eyes had become a bit dated in design and the functionality of the system i was using did not offer all of the features i wanted to offer to our shared community, so it is with great pleasure that i can now announce that the website has undergone a fresh lick of paint, i think you are going to like the new website i know i do, but of course i would say that wouldn`t i?

For all of the existing members i have sent you an email, you will need to re-register it is just as quick and simple as before.

The transition from the old design to the new one is now complete

Dean

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.

good everybody, my name is Michelle a mother of three months old baby boy. his name is Janmer. his name was after the month where he was born which is january and his antibiotic during his sergury meropenem.

at first i really dont know that i have a carried with me on my womb a baby with gastroschisis, i just know when the baby was born. i really felt disappointed, because with all those babies why my son? i really felt sorry with his condition. and we really spend a lot of money, at that time of my delivery my husband had only 1500php. after birth the baby was rush into the hospital for operation. and at that time i just got leave from my class. i am BEED graduating student in Capitol University in Cagayan de Oro city..

now my baby is progressing and has positive response from the operation. its just that he always has a fever.

my question is.. how to handle babies from operation of Gastroschisis, please help me….i love my son..

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