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Shaun's Story

Read about Shaun's short bowel survivor story from his Grandma Moraig.

When Sarah went for her first scan John and Sarah were told the baby had Gastroschisis, (a condition in which the bowel develops outside the baby’s abdomen) which at the time they did not have a clue about. The doctor tried to explain what it was, and then later we looked it up on the internet to find out about it. It all seemed quite scary but Sarah and John wanted the baby so it all went ahead. Shaun was born at 20 minutes to 2 on Christmas morning 2008. He was beautiful even with his condition - they were scared but excited as well. He was so small he was placed in an incubator with the bowel in a bag hung up above the incubator until it could be re-inserted into his abdomen. This of course meant he would need an operation.

Then on 2nd January 2009 he had his first operation to put his bowel back in, which again was frightening as he was only 7 days old. He also had a central line put into a main vein in his chest which would allow him to be fed on Total Parenteral Nutrition (TPN) to give him all the nutrients he would need to survive. He was also given a great big dummy (nearly as big as Shaun) to teach him to suck as he wasn’t being fed as a normal baby would. After a few days he was looking better and you would never have believed he had had an operation. Then he was introduced to special milk, 5mls at a time which made him sick quite a few times but the nurses said this was normal.

We all thought he was coming on well even though he was still attached to wires and the central line. Then suddenly! he became very ill and started to swell up (it looked like someone was pumping him full of air); his tummy was enormous and he had to be put on a ventilator to breathe for him. It was the most frightening thing I have ever seen in my life and Sarah and John were told to prepare themselves for the worst as he also had a line infection as well which was also very dangerous. They told us that if they did not operate immediately to get the swelling down he would die.

Shaun was operated on that day. We were all worried sick, not knowing how this was going to end, when John received the phone call from the surgeon. John and Sarah rushed up to see him. Sarah's mum and I were scared to walk into the ward, we could not find them at first, then they came out a room with the surgeon and they were smiling - it was such a relief! The operation had saved his life but he had lost 18cms of his bowel which had died inside him resulting in Shaun only having 34cms of bowel left. He had a few tubes and a stoma in his stomach and a little colostomy bag. A few days later he was starting to look a lot better, he just seemed to bounce back after all he had gone through, he was so strong.
A few weeks later Shaun was transferred to Pendlebury Childrens Hospital where they could deal with his TPN. It was in Pendlebury that Sarah learned how to administer the TPN and how to hook Shaun on and off the TPN. Sarah handled the TPN and all the equipment really well even though it was very complicated and frightening. Sarah coped amazingly well with it all - before long she was dealing with it like a nurse.

During his long stay in Pendlebury, Shaun had another big operation intended to lengthen his remaining good bowel. The operation was to take up to 8 hours but it only took 5 hours because Mr Morabito could not lengthen the bowel as more of it had died, so only the stomas were reversed and he would try again at a later date. Again a few days later Shaun was laughing, just amazing, and because Sarah was so good dealing with the TPN Shaun was allow to go home after 7 months in the hospital and for most of this time he had spent on his back because of the stomas and tubes in his stomach. This resulted in him having to have a special chair to strengthen his back and to allow him to learn to sit up. Before long he was sitting up laughing and playing. He really came on great being home with his mum and dad. All this time Sarah was still coping with his TPN and keeping his central line clear of infections. One night he became very ill being sick. Sarah and John phoned an ambulance and he was admitted to Manchester Royal but only for a few days as it was a tummy bug not to do with his condition.
Shaun has been on special milk since birth and his diet has to be monitored closely, being introduced to different foods slowly. At first it was plenty of veg which his dad cooked by the bucket-load, then Shaun was taken off the TPN for good as he was well enough and able to cope without it.
Shaun was 3 years old on Christmas Day 2011 and he is just a little marvel to me. He is still under Mr Morabito and attends his short bowel clinic at The Royal Manchester Children’s Hospital but we all think he is well on the way to being a normal healthy boy. We’re not sure if Shaun will need another operation (hopefully not) but if so we will all be there to support him.