Short Bowel Survivor & Friends

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Scott's Story

 Scott's Story

My name is Emily and I am Scott’s mum. I was 18 years old when I found out I was pregnant. I went to my 12 week scan and had the routine blood tests and that's when they found out there was something wrong with my baby. They rang me up a couple of days later and said they thought my baby had Spina Bifida. When we went up to the hospital, they diagnosed my baby with suspected Gastroschisis. We were then transferred to Saint Marys Hospital that is were we got the diagnosis of Gastroschisis (where the bowel is on the outside of the body) We went for scans every 2 weeks then I was booked in to be induced for the 14th of March 2006.

On the 14th of March I went into St Mary’s hospital to be induced and finally met my baby. After blood tests and heart monitoring I was taken up the labour Ward on the 15th March to be induced. After a long and painful labour I gave birth to a baby boy that we named Scott.
Scott was taken straight from us up to the Special Care Baby Unit were he was examined to see what was wrong with him. Scott’s abdominal wall had closed meaning that the bowel that was on the outside had been cut off so it looked like Scott was born perfectly Normal.
When Scott was 3 hours old he was taken to theatre and his bowel examined to see what was actually wrong with him. After about 3 hours in theatre we found out he only had 39cms of bowel and so he became a Short Bowel Syndrome Baby.
While in theatre he had an operation to give him stomas. The stomas were used as part of a bowel lengthening process. Scott had two stomas, one on either side of his stomach. On the right side of Scott stomach a bag was attached to the stoma so that all the fluid that Scott took via mouth passed through his short bowel and was collected in the Stoma Bag. The one on the left side of Scott’s body had a tube that was used to recycle the fluids that
had been collected in the stoma bag. This was to enable the lower part of Scott’s bowel to function as normal.
We then went through a long slow process where we had to clamp off the stoma on the right hand side with the tube coming out of it.The bag would be clamped for 5 minutes at a time after every feed.The time would increase by 5 minutes until the bag was fully clamped for an hour.Then after a few weeks we reached 4 hourly clamping between feeds.This process was done to enable Scott’s bowel to be stretched ready for bowel lengthening.
When Scott was 6 months old in the September 2006 he was taken to theatre again to have bowel lengthening done. After a long wait of 8 hours Mr Morabito came out and told us that the operation was successful and he had managed to lengthen Scott’s bowel to 98cm which was amazing but the long slow process had not stopped there.
After a couple of days in ICU Scott was allowed back onto the ward were everything seemed to be going well. He was on 24 hour TPN and was nil by mouth just until his bowel had recovered. It was a long wait for Scott to open his bowels. A week after his operation Scott started projectile vomiting, which was a bit of a worry as he had still not opened his bowels. We were told that this can sometimes happen because of the bowel lengthening as the bowel is operating in to different directions which could be the cause of the vomiting. This should hopefully stop as the bowel starts to work together operating in the same direction. When Scott did open his bowels the stools were very loose and we went though a lot of changes of clothes. As Scott started eating again his TPN was gradually reduced until he was finally down to just 12 hours of TPN a day
In December 2006 Scott was still vomiting very badly so the doctors decided to do scan and tests they came to the conclusion that Scott had Adhesions (That is when as the bowel is healing it sticks together). So he went back down to theatre and had another operation. He was in theatre for another 4 hour operation to unblock his bowel. Then Scott was put back in ICU for a few days and then he was allowed back onto the ward.
While Scott was in hospital I was learning to do home TPN so he could come home when he was better. On the 20th of December we got good news that
we could bring Scott home for his 1st Christmas. We had everything delivered to the house ready for him to come home. It was great to have Scott home - but it was hard work as the TPN machine kept going off in the night, Scott getting high temperatures due to line infections and having to be rushed back to the hospital.
Scott was on a lot of medication due to having short gut. These were used to try and thicken his stools and keep food and fluids in his bowel for longer periods. Also until he was 4 years old he was on vitamin B12 injections because food did not stay in his bowel long enough for vitamins to be absorbed. This also meant that Scott had to go to the toilet a number of times a day and had really loose stools.
Scott’s diet was very strict. He was on breast milk to start with and then went onto pre-digested milk. At 9 months old we had started weaning with a little bit of baby rice. The diet was so strict that Scott could not eat anything that had cows milk, egg or gluten in it. These products were gradually re-introduced over a period of years, starting with Gluten and then followed by egg, and finally milk.
Scott is now a happy, lively 5 year old who apart from the fact that he still needs to go to the toilet very regularly, lives a normal life and like other children Scott goes to school and has lots of friends.

Registered with:
The Charities Commission for England and Wales

Registration Number: 1149354

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