Short Bowel Survivor & Friends

 Harvey's Story

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Harvey – by Steve & Zoe

Friday 10th August, 2001 at 6:00 my water broke. I was 34 weeks pregnant with a baby suffering from Gastroschisis. I immediately telephoned the delivery unit at St Mary’s Hospital and was advised to go there straight away.

After several hours of tears and pains Harvey Stephen was born at 15:16 and weighed 4lb by natural birth and was more or less taken up to the Neo-Natal Surgical Unit(NNSU) to be incubated. I and my husband Steve were told Harvey would need surgery to correct the Gastroscihsis, he was in surgery for approx 4 hours. Finally he arrived back safely in NNSU ventilated. Harvey’s surgeon Mr Bianchi came to greet us and explain exactly the situation we were in. As there was so much of the short bowel on the outside of Harvey’s stomach it needed to be put back in gradually, so he had an open wound in the centre of his stomach and the bowel was kept in a sack to keep it moist and was attached to top of the incubator. This was to make room for it to fit in. When he was one week old he was taken back to theatre to have his wound closed. Unfortunately whilst I was pregnant the blood supply had stopped flowing o the part of the bowel which was outside, this caused it to die and so Harvey was left with 25cm of bowel compared to the normal 300cm of a healthy baby. We were told that as Harvey grew the bowel would grow with him but would always remain very short. Whilst in surgery Mr Bianchi inserted a long line into Harvey’s Jugular vein so he could be fed intravenously. Over the next several months he had lots of infections in his long line which were treated with antibiotics or a new line was have to be inserted in theatre.

When Harvey was a couple of months old we were told by Mr Bianchi that a further operation would take place which was a bowel lengthening but before this could happen he had two tubes inserted into two different parts of his bowel. We would feed him milk orally and also insert some into one of his tubes. Whilst this was happening, the other tube would have a clamp on it. We would time how long Harvey could tolerate this before vomiting and then we would release the clamp. Whilst both tubes were clamped it was stretching his bowel. The idea was to try to make his bowel thicker and then it would be cut in surgery and made longer.

Harvey finally stabilised and began to gain weight and grow steadily. After spending 8 months in NNSU we were told we were going to be transferred to Pendlebury Children’s Hospital. We arrived on Victoria Ward and within a couple of weeks they allowed us to leave hospital for a few hours at a time and then we were able to have him stay overnight at home.

In September 2002 after several X-Rays, Ultra Sounds and Barium X-Rays Harvey was ready to have the Bowel Lengthening operation. The procedure was a success and Harvey now had 50 cm of short bowel. Stephen and I wanted Harvey to come home so we were trained to do Total Parenteral Nutrition (T.P.N.) this took several months and we had lots of equipment delivered to our house. Harvey’s bedroom looked like a mini treatment room. Having home T.P.N. did restrict us slightly because of the hours he needed to be connected up but the most important thing was – we finally had our baby home at last.

When Harvey turned 2 years old his long line dislodged and fell out. At first we were worried but decided to try and see if he could thrive without it – and he did!

Harvey is now 8 years old and is a very happy and healthy little boy. He is quite small for his age even though he has a huge appetite. See pictures… to follow