Following on from local media coverage back in February, Kent News continues the coverage with a report which refutes the cluster of cases.

“An NHS report from Meradin Peachey, Kent’s Director of Health, said the frequency of cases is “within normal levels”. She added the rate of gastroschisis in Gravesend between 1996 and 2011 was close to the national average, and the “statistical analysis of the rates show this is what we would expect to see due to gastroschisis being a relatively rare condition”.”

Are you in Kent? Are you in Northfleet? help Sonia and the other families affected by Gastroschisis in the area by contacting Sonia via doristella@hotmail.co.uk

BBC Coverage: http://www.bbc.co.uk/news/uk-england-kent-17960400

We ended up going in for monthly ultrasounds and nst, which was eventually increased to bimonthly and then weekly. He started having problems with the umbilical cord and wasn’t receiving enough oxygen or food. That’s when his growth started to slow down. I was told we would be very lucky if he was weighed 4 pounds at birth.

We met with some doctors at Children’s Hospital and scheduled an induction date for when I was 36 weeks pregnant. I went into labor naturally at 32 weeks on a Monday. I went to Children’s, they told me it wasn’t labor, just a bladder infection and sent me home. I waited everything out until Friday until I couldn’t take it anymore. Max was born at a hospital that wasn’t equipped to care for him because we couldn’t make it back to Children’s in time. He weighed 5 pounds 2 ounces, which seemed to be a miracle in itself. I only got to see him for half an hour before they transferred him. I had some problems so I was forced to stay in the hospital over night, away from him.

It took him two surgeries to close his abdomen. A month before I was allowed to hold him. Two months before he could come home. He had to have another surgery to repair a dual inguinal hernia caused by the pressure of the intestines. He has no bellybutton, just a small scar that almost resembles an outie. He is now a very happy, healthy 7 month old, learning how to crawl and holding his bottle all by himself. He has the most beautiful smile and the world’s best cuddles.

I am concerned that as he gets older, he’ll be teased or become self conscience about his scars or the way his belly is shaped.

Has anyone got any advice for me and him please.

I was born with Gastroschisis in 1985 in St. Mary’s Hospital in London, I was immediately moved to great Ormond street hospital for specialised care. As Well as Gastroschisis i was also born with Intestinal malrotation to complicate matters. The surgery was successful but there were complications in closing up my stomach. unfortunately, they sewed my bowel to my scar, something they could not fix at the time as it was to much of a risk.

Growing up the only problems i had as a result of the Gastroschisis was  i had asthma and was a little shy about showing my stomach as my scar goes all the way from the bottom of my midriff to my chest and is quite jagged, (its like a tree with branches). When i turned 18 i went to see a skin graph specialist regarding it, unfortunately i was told that they would have to remove my bowel from my scar before they could do anything but i was told there was a very high involved in doing it, so i didn’t pursue it.

When i turned 21 (i am now 27), that’s when i started to have complications. I have been getting severe abdominal cramp, so much so the pain causes me to pass out on occasion, i can’t digest food properly anymore and am constantly in the bathroom. I have been to the hospital on many many occasion’s over the last 6 years regarding these problems as they cause me so much pain, i have been passed around to at least 6 different specialists and had every conceivable test and nobody can seem to help me diagnose the problems i am having. I am very reluctant to have exploratory surgery as this first requires the removal of my bowel from my scar, something all the doctors and surgeons say is very high risk.

If anybody has similar symptoms or has been treated successfully in the past. Please contact me, I’m stuck as to where to go and what to do next.

Pasquale

i am just wondering about those who have recurrent surgeries and bouts of the other effects and how they deal with them.i went three years not understanding the effects of my last surgery which involved the removal of my illeocolic valve and secrum. not to mention the several splices between the three parts of the small intestine.

recently i was reviewed by a g.i. and he seemed only interested in the mechanics of my current situation, marking a few small blockages and malrotation, colon completly on left side and small intestine on right side, held together by adhesions. he prescribed me an antidepressant and only wanted to up my medication. the side effects of the prescription were in every way what i deal with on a daily basis anyhow. i quit taking them. this was my latest attempt to feel better.

so i ask myself how can i improve my quality of life? i dont even kno if its ok to work out or how much physical work i should do. the doctors here really are out of touch with ppl of our condition.

Thanks

Kirsty

Where is all of this?

It is within your profile when you log in to the site. If you have any problems let me know in the comments below.

A quick update to the changes to the site over the past few days, you can obviously see the new design and this will be the final layout other than a logo which I have never really settled on, so if you have those design skills send your logo ideas over to me and I will let the community decide on the one to use.

The reason behind this update is mainly to let you all know that we are now on Twitter and Facebook so if you would like to follow the latest stories added via either then you can by following on twitter: http://twitter.com/#!/Gastroschisis or becoming a fan on Facebook http://www.facebook.com/gastroschisis

All of your stories that are posted on the site are automatically posted to both for you to share with your friends and followers.

Thank you for making the site such a positive place it keeps me motivated to keep it running.

Dean

First of all my consultant has adv that i will have a natural birth but from what iv read i have yet to c any 1 that has done this or even advises this?

Secondly i no all individual babies have different paths to recovery but do u only find out how bad it is once the baby is born or are u able to tell at a 20 week scan? 

Thirdly has any1 already had a young child an how did this affect the bonding process between them as i hav a 2 yr old already an this is just 1 of the major worries please adv if u hav any tips on how to bring them together an not create resentment.

Lastly has any 1 experinced Necrotising Enteriocolitis also called NEC as most of the stories on here are really posotive but some peoplw have said this is quite common.

Thank you for your time an any comments would be much appreciated xxx

I read something on a post about parent’s hair sample testing but can’t find the post now. Has anyone done this? How long after the baby is born is it done?

We slowly came to terms with it and got information where we could – unfortunately we got some misinformation at one point and were told that there might be possible syndromes associated with the condition, this was very depressing for us. Fortunately we soon found out that the doctor who told us that was not correct. We had regular scans with the same consultant who initially scanned us and she checked his growth, amniotic fluid level and to see if the bowel was distended or blocked.

I had wanted a vaginal birth, but in the end we needed to have an elective Csection because at week 38 his head was still not engaged and I had developed hydroamnios – this is an excess of amniotic fluid and is quite common with Gastroschisis because the baby does not digest the amniotic fluid very efficiently.

The birth was stressful I suppose, I prepared as much as I could, but really hated the idea of a c section all my life. In the end it was ok, we spoke to the doctors and explained that we wanted to see our son as soon as possible, before he was cleaned up – but on the day we couldn’t do that as he needed a little help breathing so had to be taken from me straight to a small table where they worked on him, they wrapped him up straight away to prevent heat loss and moisture loss through the bowel. They did take photographs for us though, so we have those even though some people would find them frightening or greusome, they are beautiful to me, my son with his bowel outside, and his umbilical cord, in his first few seconds of life. Before they took him from the room in a transport incubator they wheeled him over next to my face and I could look in. I handed in a tiny knitted lamb that we had brought for him and we kept it in his cot all the time – it helped me to know that he had something from us, not just hospital tubes.

He was rushed rom the Maternity hospital to the Children’s hospital on the other side of the city immediately after he was born. This was difficult as it meant I was left alone in recovery while my husband stayed with our son. We had agreed in advance that this was what we would do – my husband found that very difficult to be torn between the two of us. I was very tired and nauseous from the operation and my hormones were racing, I saw a photograph of my son and felt nothing, I didn’t feel any instant love for him.

In preparation for what I knew would be a hard task I took the advice of a Lactation Consultant (LC) prior to his birth, and began hand expressig and freezing collostrum four days before he was delivered by elective C-Section at 38 weeks. Once he was born I began expressing using a hospital grade pump and soon had an excellent supply and was stacking up milk in the freezer. Because of his condition he was Nil Per Oral (NPO) and was getting fluids and nutrients called TPN by a central IV line.

I asked my husband to photograph everything for me, so that I could see where my son was. My husband did a great job for me, made videos showing me all the medical paraphenalia, and talked me through all of it – I like information, it helps me to cope! My son looked so helpless, and I felt lost without him, but I could see how expertly he was taken care of. His bowel was in a silo above his belly, and he was on a ventillator to help him breathe. He was given a muscle relaxant so was just lying still with his chest rising and falling with his breath.

He underwent surgery the day after he was born and the large and small intestines which were outside his body were put back in.

As soon as we were able to hold him my husband and I took turns to do as much skin to skin contact with him as possible; this was something we had to instigate ourselves, it was never suggested to us by hospital staff and while all of the nurses seemed to know the term “Kangaroo Care” some were unfamiliar with how it worked, often asking what would we like him wrapped in when they took him from the incubator. Because of his surgery, belly to belly was not possible at first, so I held him, side lying against my belly so the umbilical scar wasn’t in contact with my skin.

My advice to anyone with a sick baby or baby with Gastroschisis is to research Kangaroo Care yourself before the birth as it greatly improves healing, this is well documented but unfortunately not all hospitals actively encourage it. When we did instigate Kangaroo Care the staff were supportive of it though.

It took some time before he got to the stage of being able to tolerate oral feeds, and when we reached that point, he was given 1ml collostrum per hour by a tube inserted into his stomach via his nose (NG tube) and the quantity was very slowly increased over the course of a few weeks and he was weaned off TPN.

I was determined to breastfeed exclusively and had done some research and reading about possible pitfalls so I thought I was quite well prepared. The hospital environment was far from ideal – while I did have the facility to sleep in the same room with my son, I had no access to cooking facilities or fridge so all food had to be brought in from outside. I did get a room with a bed and kitchen facilities, but on the far side of the hospital from my son, so I just used it to store my clothing and food.  My son was tolerating the NG infused breastmilk quite well, so we began to try and establish breastfeeding. The NG tube was still in so it was awkward to latch him on, initially his feeds were only minutes and he was then ‘topped up’ by NG tube. Gradually the feeds got longer, and the NG tube was removed. Possibly due to overzealous pumping, I had an oversupply, so feeding was pretty difficult. Nursing staff rotated each day so I had different people offering advice all the time, out of interest we counted up the number of nurses and there were 35 in all and each one had some piece of well meaning advice regarding breastfeeding, but none were really trained enough to help out with the difficulties I was experiencing. The hospital did not have a Lactation Consultant. I stayed in touch with my own LC by text message as I wasn’t allowed to bring her in to the hospital as an outside consultant.  My son was weighed every day – usually at 5:30 AM to suit nursing rosters! This daily weighing made me a nervous wreck, waiting to see if he was up or down. He started to have projectile vomits, which were very distressing for him causing him to arch his back and paddle his hands while screaming – I was distraught watching him. He was diagnosed with reflux and started medications for that. He was constantly straining with gas and pain, and developed both Umbilical and Inguinal hernias. He got a peri-anal burn and the nurses took a stool sample for testing. The sample was tested for Reducing Substances, and came back +3. A consultant neonatologist determined that his weight gain was not adequate, and diagnosed a transient lactose intolerance and wanted to put him on a lactose free formula. I was dead set against this and had looked into lactose intolerance and oversupply both on-line and in publications, I raised the possibility of this with the dietician, nurses and neonatologist, and all of them said to put him on the formula to let the bowel rest. I knew this was not the right thing to do and kept arguing against it, my husband and family all tried to persuade me to switch to formula and because the neonatologist diagnosed a problem, they said that I should trust the hospital as they were experts in caring for surgical and sick babies, and he couldn’t be treated the same as other babies. I tried block feeding which is a technique where you only feed from one breast in order to let the baby get fattier hind milk. I tried giving him lactase drops. His weight dropped a few days in a row and I caved in with a heavy heart and he was started on a lactose free formula. Five days later there was no improvement and in fact he seemed much much worse, his skin was translucent and grey and he was still vomiting. His belly became distended. A senior nurse took a look at him and ordered a battery of tests. All of a sudden there were lots of doctors, lots of questions, X-Rays, IV antibiotics. Thirty 15ml syringes full of air and milk were removed from his belly via the NG tube. Four hours later we were taken aside by the Surgical Registrar who explained that our baby had Necrotising Enteriocolitis also called NEC; a life-threatening disease of the bowel. For some reason my husband asked if it was related to formula feeding. It was. Subsequently we were told NEC was a very common complication of Gastroschisis with an incidence rate of 20% and that it might have happened whether we were feeding Breastmilk or Formula. We will never know for sure. We have found that some hospitals will combine breastmilk and formula so that there is always breastmilk in the baby’s diet, because it contains essential immunoglobulins which fight infections like NEC. With tears in his eyes husband said how sorry he was for doubting me. I repeatedly stated, if he pulled through from NEC that we wanted him fed Breastmilk. He was given TPN by central IV again which required a general anaesthetic to put in and then after 22 painful days the slow process of reintroducing oral feeds began all over again and soon we were ready to start Breastfeeding again. Again I had the same oversupply problems, but my son didn’t have the malabsorbtion symptoms and I found an experienced nurse who helped me with positioning him to improve matters. Slowly he started to gain weight and this time I insisted that he should be weighed only twice a week. 9 long weeks after he was born, we were discharged. He is now seven months old, breastfeeding comforts him, and the fact that he breastfeeds comforts me. We started solids too about a month ago and that went really well, we even did Baby Led Weaning with him and so far its going well.

His weight has always been an issue, but I think weight is sometimes over emphasised by some doctors. We were put under pressure to introduce formula again by some, but we have now found a great paediatrician who is very supportive of breastfeeding and very encouraging – she says sure he is a little small for his age, but he’ll catch up!

xxx Baggage

The reason I am posting is we would like to have another child, but naturally we are very worried. We have asked for a referral to a geneticist but have been told the waiting list is one year long!! We don’t have that much time as we started our family quite late, partly because of recurrent miscarriage.

I am specifically looking to see if anyone else has a child with Gastroschisis in addition to other complaints. Our son also has the following

Cavernous Haemanginoma

Grey Matter Heterotopia (currently asymptomatic, but showed up on MRI)

at risk of Hydrocephalus (currently asymptomatic, but showed up on MRI)

and I have had 3 miscarriages, all first trimester.

I was put on Aspirin and Heparin during my last pregnancy and wonder if anyone else took these medications?

I am 40 years old.

many thanks it would be wonderful to connect with others in a similar situation.

Baggage