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
X

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 ??

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..

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

At one of our earliest antenatal appointments the midwife said “Your AFP results have come back a little raised, this is nothing to worry about…and its nothing to do with the baby, you may be at risk of pre eclampsia later on, but we shall send you to the hospital for a scan to make sure.” In retrospect this statement was a little confusing, but unusually for me, I was quite trusting and thought no more of it until the day of the scan. Unbeknown to me at the time both my mum and sister were confused by this midwifes explanation and feared the worst.
At week 18 we arrived at the hospital for our scan and the sonographer was extremely tentative and asked us if we fully understood why we were there. Due to the midwifes explanation we were quite noncholent and said that we did, but obviously, we did not. When the sonographer told us what she had found I think she could see we was not exactly prepared for this type of news and took us to a consulting room to speak with the consultant. First of all though a midwife came in and explained that she really didn’t know very much about the condition and said that it was highly likely that I would need to have a caesarean birth and quite early on. The midwife then left and in came the consultant whos greating was “Hello, isn’t it terrible news!” So now full of fear that this was a terrible thing for my baby to have, she then told us that she too didn’t know much about the condition but at one time termination was an option!

I can barely remember the drive home, and when I arrived at work the next day my colleague sent me home as I was in such a state of shock I was no use to man or beast. Fortunately we only had to wait a couple of days to see the wonderful staff at Addenbrookes Hospital. When we arrived there the condition was explained fully by the obstiatrican, pediatric and surgical consultants. Obviously we were still concerned and worried but it was such a relief to hear that I would like have a normal birth and that our son would only be in surgery for about an hour and was 90% likely to experience no further problems following this.

If I could say to that the next 6 months were hassle free I would be lying! I hated being pregnant and felt ill all the time, but in terms of the baby’s health, all of our scans were good and he experienced no adverse reaction to his bowel. I was finally given an induction date for february at 37 weeks and 3 days gest. When we arrived at the hospital for the induction neither of us had slept the night before through the sheer excitement. We waited patiently in a delivery room from about 9am wondering when our time would come. At 4pm a doctor came to tell us that there were no cots available in the neonatal unit and so we should go home and come back the next day! Obviously this was another sleepless night!

We arrived back the next day at 7am as instructed and waited… and waited…. before being told it was likely that we would be sent home again as still no cots were available. At 2pm I started to get very stressed and packed up all our bags and informed the midwife were off! She asked us to hang on as the consultant was on his way to see us. Fortunately we waited and when he arrived he stated that he had negotiated a cot on the pediatric intensive care ward and the induction would commence after all! What a relief!

And so at 5.30pm it “all kicked off” and at 6.30 I went for a walk around the hospital. At approx 7.00 my contractions started. Turns out I hated birth too!! The rest of the night is blurry in parts and totally unfathomable in others. Do not talk to me about birth plans, the thing might as well been ripped up and thrown out the window. I took gas and air, the epidural, forceps, suction and an episotomy!!

At 1200 the following lunchtime I remember being surrounded by a full team of doctors, surgeons and nurses yelling at me to push, but I just couldn’t give any more. I heard the head consultant saying that I had gone too long and that I needed to be prepped for a c section. I was so disappointed and looked to my husband for his help to say ‘No!’ but as I looked around he was welling up and looked in such a state of shock and anxiety that I decided to give in and let it all be over for his sake. However, an other doctor insisted that he only needed a few more minutes and that he was certain I was moments away, and so somehow I managed to summon up some strength and pushed once again. With the help of the forceps and suction George was born at 1215pm weighing 5lbs 13oz.

I was handed him for 3 seconds, and all I managed to do was look at his little face, and then conciously looked down at his bowel to check the colouring (after reading a post on here by another member). It was a lovely pink colour and I remember thinking “he will be fine!” My husband left to see George in the Neonatal unit and sign all the consent forms, and within minutes all the doctors and nurses left too and I was left alone, still confused by the happy, thinking “Oh party over!”

George was operated on within 2 hrs and after the op he was off the ventilator within 1 hr. The staff were amazed. We went to see him in PICU and he was so small and hungry! I am not sure if it was the lack of contact I had had with him at this stage or the happy were still leaving me a bit dazed, but it just didn’t seem real and he certanly was stirring an emotion in me but he didn’t seem like he was mine. But that night when I went back to the ward and my husband went to his room, I was left alone on a ward with mothers surrounded by their babies and it was the worst emotional pain I have ever felt.

The following days were tough and I don’t think I have ever been able to express to anybody how they really felt, you will all know of course, but George was doing well and needed very little nursing care in all. By day 9 I was given the opportunity by a wonderful nurse to try breastfeeding. She saw how strong Georges suck was on my little finger and said there was no harm in trying. George took to it straight away and we were discharged 3 days later!

All the staff said that they had never seen a gastro baby do this well and certainly to be going home so soon and breastfeeding exclusively was no mean feat.

We have been home nearly 7 weeks now and it has been hard. George wants to feed every hour of the day and sleeps very little. Yet he has been slow to put on any weight. He is now 6lb 8oz after 2 very good weeks, but has now been given Infatrini to assist. I am still breastfeeding and love doing so, and I am a sensible well adjusted person, yet I do still feel guilty that I can’t give him all he needs. I do find myself saying sorry to him a lot, and my husband asks me what I have to be sorry about!

We have visted an osteopath twice now as I was concerned about the amount of sleep he was getting and the constant painful crys, and I do think that that has helped, although he has been poorly this week, so he may just be having a rest from the crying until he gets better but I’ll let you know.

Having seen the surgeon today for his follow up appointment he is very happy with Georges progress and the only thing of any note was that he now has a small umbilical hernia, but that will heal in time and is very common in a ‘normal’ baby.

And so now I am just waiting for a normal life to begin, but I expect I’ll never stop worrying about my little soldier!