Gastroschisis

I was born with Gastroschisis

Hi, I’m Riley.

I am 14 years old and I was born with gastroschisis. Obviously, being as young as I was I can’t remember a thing. It hasn’t effected my life stle. I live a completely nomal teenage life. I don’t have to have check up for it or anything. Everythings, well.. normal I guess.

Although sometimes I am a bit embaressed 0f my scars, but alot of my friends think it’s really cool. I have 2 scars. One where my bely button is suppost to be and another just above my underwear line. I had 3 surgeries and was in the hospital for about 3-5 months. No, it hasn’t changed the way I have to eat or live. I eat more then most of them.

Some of your childern in future may want cosmetic surgery to get the scar fixed up, but I don’t want it gone. I honestl think it’s prett cool myself. It makes me different to everyone else in my own special way. No body I know has my scars or has had gastroschisis. So it makes me unique. And I like it that way.

Wishing you all the best with your kids,

Riley.

Now 16

My name is christine i am 16 though out my school life i got picked on for my scar yeah im not gonna lie it gets me down all the time you know the ones like “your a clone ” “test tube baby” i have heard them all and much worse then  one day i came homw and my mum gave me this piece of advice and i will pass it to you

That scar make you who you are it makes that specail person that stands in the mirror and says  nothing will stop me and no-one can get me down so don’t  let it.

So PLEASE  don’t let it get you down we are all very specail

has anyone had re-constructive surgery as a teenager?

My name is Holly and I am 17 years old and was born with gastroschisis. I was left with no belly button and a rather long wonky scar down my stomach which hasn’t really caused me any problems up until now where it is making me quite self concious. I have had a consultation with a surgeon when I was 14 who told me surgery would be available to me to re-construct a belly button and to tidy up the appearance of the scar. I am considering having a gap year before going to university and would like to know from anyone around my age who has undergone the surgery. I would really like to know what is involved, how long the recovery process is and whether the surgery was successful and worth the operation. I hope there is someone who can help answer my questions. Before and after photos would also be very helpful! Thank you.

The one to read – Gastroschisis with the happiest ending

I fell pregnant with my first baby in April 2008 at 26 years old.  My husband and I were delighted as life was going to plan.  We had out first scan at 12 weeks in Belgium as we’d been misinformed we wouldn’t get a scan until 20 weeks.  The scan went great and we got some lovely photos and delighted in sharing our wonderful news with friends and family.

Days later, we were told that we were entitled to a scan at 12 weeks and so were booked in at our local hospital just days later.  Feeling a little bit sneaky having another peak at our baby, we were just looking forward to getting some more snaps.  As it turned out the ladies at Pembury Hospital picked up a potential problem and consulted each other for second opinions in the absence of the Consultant, who at the time, was on holiday.

They confirmed to us that our baby had Gastroschisis which we’d never heard of.  Their basic description was that there was a hole in the baby’s abdomen and through this some bowels were protruding.  As the Consultant was away, and not wishing to keep us in limbo, we were booked an appointment at Kings College Hospital the very next day.

At Kings I had a thorough scan in which several students attended.  They confirmed the Gastroschisis and used a similar sentence to explain the problem but did stress it’s not normally linked to any other chromosomal abnormalities and the problem is normally isolated.  None the less I was offered an Amnio, despite my odds being as low as 1:17,500.  My husband and I decided to think about it and left the hospital.

Our initial thoughts were of fear for our baby and also of what we might miss.  How long would the baby need care for?  What would the outcome be?  When could we hold our baby?  Will it affect us all forever?  We decided to do some more research into Gastroschisis and better prepare ourselves.  This website and a couple of others came up.  Although they gave us a better understanding of what might be, they also frightened the life out of us.  So many conflicting stories with different time scales and outcomes.  We feared that the whole thing might have been down played to us and that it was worse than we were being told.  So we gave ourselves a timescale by which to decide whether to terminate the pregnancy or continue and promised ourselves that in the mean time we would work hard at finding out the facts.

Our midwife was a fantastic help in helping us get appointments and also in her support.  Within the week, we met a Consultant, a Neonatologist, a Specialist and a few other medical staff.  Between them they helped explain what might be to come and what we could expect, best and worst case scenario.

We were told that as far as medical science knows so far, the problem normally arises in very young parents (teenage) and often in those who abuse drugs.  We fall into neither category as I’m sure many don’t and it’s daft to get caught up in the why’s when it’s more important to look to the future.  They said that after our 20 week scan, which was to be the next one, we could expect regular scans to monitor the baby’s growth.  Often these babies are smaller than normal and it’s important to keep an eye on what insides are on the outside and what condition they are in.

Often these babies have a habit of arriving early so they like to induce the mother at an appropriate hospital so that the baby can be cared for in the right place straight away.  It was of no added benefit to have a caesarean although the baby would be monitored closely so it was likely to be the case.  They would encourage me to express as babies with bowel complications benefit that much more from having their mother’s breast milk.  Usually you can just expect bowels (intestines to you and I) to be protruding from the hole, but sometimes there can be more like the liver, testes etc.  The less on the outside, generally the less complicated merely because the hole might be very small and harder to push things back through and also because the baby’s tummy might not be big enough to put it all back straight away.

Something else they monitor closely is the restriction through the hole.  They can become quite tight and strangle the bowels protruding and this might be a cause to induce early.  In the worst case scenario, some bowels may need to be removed but they reassured us that we all have meters of intestines, much of which we can happily live without.  The baby is drip fed to begin with making the bowels free of any waste and a perfect situation to operate if necessary.  The most important thing was that Gastroschisis is not linked to any other abnormality and on recovering from this, the baby should lead a normal life.  3 months tended to be the average time we were warned to expect to be in hospital for and that we were able to choose between Lewisham, Kings and St Thomas’, all in London a good hour from home.  This was provided there was a cot on the day but that again was out of our control.

Once we had all this information we had made our decision quite easily.  We were to keep our baby, due on 20^th January 2009 and not perform and amnio.  After this initial turmoil we went through, upon having the facts we were thrilled to be continuing and I had a fantastic pregnancy.  I probably had about 15 scans in all and these were either at my local hospital or Lewisham Hospital.  Our last scan was on Christmas eve when I was 36 weeks pregnant.  After a few minor scares at scans (low fluid levels mainly), they were happy to set my date to be induced for 4^th January 2009.

We arrived at Lewisham Hospital and there was indeed a cot available in Intensive Care but the labour ward was rather busy so were told to wait until morning.  However, baby had ideas of its own and I came into labour there and then!  It was a long labour for me but when they put me on the monitor they could tell baby was pretty happy so I went ahead with a natural birth.

At the birth itself there were probably 8 people in the room, 2 of them being midwives.  I only really noticed the midwives and my husband and pushed our little boy out as the doctors whisked him on to their prepared platform at the foot of my bed.  It was a little while before we heard the cry we wanted but it came at last and we breathed a sigh of relief.  Our beautiful little boy, Parker, weighing 4lb 13oz was born at exactly 38 weeks on 6^th January 2009!  After doing what they did, a nurse brought him to me for a quick peep as he was all wrapped up in a little towel cocoon.  I gave him the quickest of cuddles before they whisked him upstairs to Intensive Care (NICU) for us to see him later.

A couple of hours went by and we made it up to NICU where he was lying on his back with his bowels in a ‘silo’ suspended from a heater above him.  The silo was a plastic contraption which held his bowels securely with no fear of infection or dehydration, in a perfect spot to slither back to their rightful home with a little help day by day.  He looked happy as you like and was clearly in no discomfort whatsoever.  It was an open top cot to allow for the silo to be suspended so we could give him a little stroke if we liked.

From that moment on I expressed every 4 hours and stored my milk in the hospital freezer ready for Parker.  He did get ventilated for a short time on day 1 having had a little morphine when they fitted the silo but he was soon off that.  I stayed in the Maternity Ward with my lovely friends in there who looked after me so well.

We were encouraged to visit as often as we liked and to be very hands on with his care.  Changing nappies, cleaning him and so on.  The bowels in his silo had looked stacked as high as he was long and we wondered how he’d ever fit it in his tummy.  But during the course of the first 6 days of his life, bit by bit they squeezed in until he was ready to go to theatre.  It seemed, however, that he had plans of his own and coughed so hard that morning that he coughed all his bowels back out just hours before his operation!  The doctors tracked me down and told me the plan for him to jump the queue and I held his hand to the operating theatre.  He was still happy as larry, even with his bowels bundled up in cling film and he knew he’d be ok.

A few hours later we were called to go and see him back in NICU.  They had successfully got all his bowels back in and had sutured him up and put on a compression bandage.  He was now ventilated due to the drugs and was in the enclosed intubator with the hand holes.  We learned how to change his nappy in there and what the different machines meant and did and when an alarm was serious or not.  He remained a happy little man but he did seem to balloon all of a sudden.

It transpired that his fluid levels had been mucked up a little, hence he got so big so quick, but the Registrar put a stop to that and he was soon on the road to recovery after a little blood transfusion to help him along.  We had another little hiccup when the ventilator was first removed and he apparently had a swollen windpipe so had to go back on but no harm done.  We finally got our first cuddle at this stage, about 8 days old.

Once his fluid levels were under control and they had got him back off the ventilator for a final time, he went from strength to strength.  At about 2 weeks they said he was ready for a bit of milk so I went to my stores and got out the early colostrum.  As I recall, his first taste of milk was a tiny weeny 2.6ml every 6 hours to see if he could tolerate it.  He got on with it so well that every day they increased it more and more, topping him up with the drip and giving it to him either by tube or bottle, depending if he was awake or asleep.  I was soon allowed a chance to try breast feeding and I was delighted that he got the hang of it straight away as I certainly didn’t know what I was doing!  We moved from room to room, downgrading dependency and getting closer to the exit!  Before we knew it we were offered a room in Intensive care and he was able to sleep in the room with us!  Just two nights we were there and he was 23 days old when they gave us the news we’d been waiting for – take your baby home!

He was finally free of tubes and wires but was half a head of hair worse off after they shaved it in order to try and get in a long line (which incidentally didn’t work)!  But it didn’t matter for a moment because he was healthy and ready to come home.

Since getting him home and having a handful of follow ups in the first 3 months, he was officially signed off and is an absolute joy.  I exclusively breast fed until he was 6 months old then weaned him and carried on breast feeding until he was nearly a year.  I’m delighted to tell you that he takes after me and is not a fussy eater at all and is a fond curry lover at 1 year 3 months old!  We haven’t had to go back for a single appointment to do with the Gastroschisis since his last check up at about 3 months.  Sure, he’s a baby and they like to spring problems on you still.  We ended up at A&E when he had croup and spent a day in hospital but that’s babies for you!  Nothing to do with the Gastroschisis.

I’m now pregnant with our second child and have had my 12 week scan when they confirmed that everything is absolutely normal, no complications.  Anyone who’s concerned, please know that there is an awful lot of hope out there and the most amazing medical world you probably never even knew existed.  The stories you’ll read on websites such as this are often the saddest stories.  I’m sorry for those who have suffered and I want you all to know that the suffering doesn’t last for everyone.  Parker is a gorgeous little toddler who does exactly the same things as his friends.  The only difference is he’s still petite, although he’ll no doubt catch up and he has a scar and no tummy button.  The scar is minimal and really it doesn’t matter.

I’d like to thank all the fantastic medical staff at Pembury Hospital and particularly Lewisham Hospital.  The nurses and other mothers were my life line and I can’t thank them enough.

If having our healthy baby home wasn’t enough of a highlight, I also managed to do my bit for many other babies in London.  Because we were so lucky to leave after just 23 days, I had stored up 18.5 litres of breast milk and donated it to St Thomas’ Hospital.  I’m so proud of that, I hope that other Mums do the same.

I’ll happily answer any questions anyone might have if I can.  With love, Mandy xxx

Continued from Rileigh John story

Sorry I thought I saved my post on a draft but it ended up going on so i’ll complete my story about my son.

I finished in saying he had to have ultrsounds on his liver.

We had to travel to Birmingham from Newport in an ambulance. It was a very uncomfortable journey. The reason why we were travelling there was because Rileigh was being violently sick and losing weight. He was bringing up bial and it took an absurdly long time for the doctors to click on to what it was. They did x-rays, ultrasounds and a scan where he had to drink white liquid which shows his digestive tract as they thought it may be blocked as his belly also looked quite swollen and was hard. It just showed dilated loops but nothing serious according to surgeons who were liaisioning with the gwent.

Well… before we went to Birmingham they took so much blood from him ready for Birmingham, it was horrid. Then when we got there the doctors said they’d rather do it themselves and took loads more. I was furious they did this. How petty!

Well, we found out he had liver disease which caused his two kinds of jaundice, the one just from not getting  enough vitamin K and the prolonged jaundiced caused from his liver ducts not excreeting the toxins from his body reflecting in his skin cells. He had to go on loads of medicines, a special feed for his liver – Caprillon, instead of breast milk and go on TPN again. His gall bladder looked too small and they thought it was blocked. But they never found out what sort of liver disease he had. They thought he was going to have surgery but after a week he was drinking and we got sent home. All the doctors could say was that it was a type of disease that his body sorted out with the the right medicines and formula. We were sooooo happy.

After having him home for just a few days he was then moaning all the time and acted uncomfortable ALL the time, he was so bad. Then he started getting streaky bloody stools.

We had to stay in hospital AGAIN, the Gwent hospital was, in my opinion, not very good, they left all the work to you and when you were upset or in a panic there was no one there to support you. The time I had to spend in that hospital (except in pregnancy and in HDU) was the most lonely and draining time of my life!

He was also sick on a canular on his hand and the bandages keeping it in place were soaked in bile for days. Each day I asked twice if it was right and they told me not to worry. This was before we went to Birmingham and when we got there they took it out revealing a big pussy knuckle. The nurse cleaned it up and afterwards, there was a massive gaping hole in his knuckle almost to the bone. He had to take anti-biotics for a week, he did and it went pussy again, he had to take another course!. I can’t explain how much it angered me, since when does a person, unqualified in medincine and health know better than qualified nurses and doctors. Its sooooo frustrating. If I wasn’t so drained and having to concentrate on yet another problem I would have made a big issue out of it!

They did lots of tests to see what was wrong, x-rays and bloods. They sent us home about 5 times and yet again I suggested on the third vist about lactose intolerance, they said they would look into it but never did. On the sixth visit it was around the 20th of december and they wanted to observe him and his stools, as they couldn’t find what was wrong they looked into his milk formula and finally realised that he had a lactose and protein intolerancy causing him to be miserable and have bloody stools we insisted on coming home on the 23rd and got to spend our first chritmas together!

In the first couple of days in the new year of 2010, they took bloods. He had to go in and have a blood transfusion. We were told that his red blood cells wern’t maturing and wern’t carrying enough oxygen around his body. There was also a clotting issue with this, which we noticed when he had bloods as it took so long to stop bleeding. All these issues were to do with his liver disease, I can’t explain it any better as I’m still unclear of it all. We were told to go to hospital straight away. We got there at 8pm and were told it wouldn’t be done until the morning. Yet again this hospital infuriated me as we caught a taxi in a rush to be told we had to stay overnight for nothing. We refused and told them we would be back in the morning. They told us to make sure we were back by 9am. We were and the transfusion would only take an hour so I thought it would be a pretty quick visit, they didn’t even sort him out until 3 and didn’t discharge us until 8 pm. It was ridiculous. You get annoyed with these little visits after spending so much time in hospital.

He went back to Birmingham at the end of January and the doctors told us he was great and that he could come off all medicines the end of febuary. We were over the moon.

We went to cardiff the beginning of March and they looked at his belly and were also very happy. They said there was 1 in 10 chance of his getting a hernia and his mucles may fuse with some of his bowels causing a blockage and maybe parts of his bowels dying. We were told that if he starts to stop pooping and has a swollen hard belly, to rush him to hospital. He’s having trouble pooping but it seems that its just his bum muscles more than anything because if i rub his bum with a wet wipe he goes no prob.

He is now 24 weeks old, a vegan, bless, because of his intolerances but he is still enjoying the different flavours of his sweet potato bake, apple and pear pudding and banana and peach dessert. He’s still a little doot wearing newborn to 3 month clothing and weighing 12lb 11oz but he now looks really healthy and happy. He’s had his 3 lots of jabs . Now if we rub his ribs in a certain way we get a little giggle here and there too. Just seeing him smile and laugh makes everything WELL WELL WELL worth while. I am so proud of my partner, Michael, myself and all importantly Rileigh.

Who knew that these tiny miracles could fight so strongly for life. I am so proud of all our children that have gone through problems with this condition. They are so brave, so special and such an inspiration to the world!

ellie-rose 15/12/06

ellie-rose was born with gastroschisis and my lil angel has been thro the mill since day one i found out ellie-rose had this defect at my 13 week scan i was dreading goin for my scan due to losin a baby 4 months befor i layed on the bed waiting for the lady to scan me n it was the most agonising wait in my life but there was more to come of those the sanographer said oh your baby is not fit for life so shock hit in and i burst into tears she then said ill have to go get the doctor to confirm it was a long horrible wait me n ellie-rose’s dad sat wile the consultant explained wat they had found but when he said the baby is fit for life but it will be a rocky road me n ellie-rose’s dad took his words on board n we went a head the pregnancy wasnt easy at all i developed high blood pressure what turned into pre-eclampsia then my waters went at 29 weeks which ment hospital stay after hospital stay then i got to 37 weeks and i was induced at st marys hospital manchester.

ellie-rose was born at 4;20am 5lb 6oz no midwife to be seen when her head arrived i got to hold ellie for 2 mins then she was wisked away that feelin of going thro all that pain and someone takin ur child away from u is the worst feelin ever the doctors put ellie-rose’s bowel in a silo bag she was so tiny in the incubator n looked soo red but she was my baby.

at 7 days old they operated on ellie-rose they managed to put all her bowel bk but there was more to come 4 days after bein operated on ellie-rose had to have a scan on her neck the left side of her face had swelled the scan confirmed the worst she had developed a blood clot in a small vein in her neck the doctors put ellie-rose on heperin injections twice daily she was on them till she was 8 weeks old at 4 weeks ellie was then able to be fed milk she developed problems with keepin milk down they then diognosed reflux was this nightmare ever gonna end ellie was then discharged at 6 weeks finally things started goin right but then after 2 trips a day to hospital for injections for the blood clot ellie-rose then developed chicken pox she had to have another hospital stay due to her bein so young,

ellie-rose was in and out of hospital for problems with weight n feeding then 5 days before ellie-rose was 2 she went for reconstruction surgery to make her a belly botton she was fine pulled thro brilliant then we got to xmas eve n she was bein violently sick she was taken into hospital by ambulance she had contracted an infection in the wound she lost soo much weight she droped to 17lb after that operation that just left a discustin scar that looks nothing like a belly botton ellie-rose is now 3 nearly 4 still in 9 to 12 months clothein and weighs 24lb and goin thro loads of tests to find out y ellie is not gaining weight also we have noticed ellie is not knoing when she has got a dirty bum until she is really sore which is makin it very difficult to potty train hopefully some one will help ellie with this problem but would like to hear if anyone else has had a child or them selfs delt wiv no sensation wen needin toilet n any help i could get wiv tryin to explain to my gp about this problem i wish everyone gud luck and all the best that they get better soon and pull thro everything

Wonacott

Our daughter is in Sweden with her Swedish man.  She found out from an ultrasound that her baby has gastroskesis.  For several weeks and until very recently, they observed swelling of the intestine inside the belly and adjacent to the wall.  But just last week (29), they could see in the ultrasound that the entire intestines inside were now swollen.  The monitoring plan has changed, as they will now do an ultrasound weekly and in a couple of weeks will change to two times weekly.  All gastroskesis births in Sweden are cessarian.   The likely cause of the swelling is the small opening in the belly wall, which is becoming smaller as the baby grows.  My question is how has the prognosis changed now that there is much more extensive swelling of the intestines?  The goal now is to get to week 34.  To get to week 35 is now considered very unlikely.