Short Bowel Survivor & Friends

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Ryans Story

My name is Ashley and this is my story about the birth of my baby Ryan. I had a rough time during my pregnancy with high blood pressure, so the Doctor’s at Bolton Hospital ask me to go for a special scan on New Year’s Eve 2010. The news was not good the umbilical cord was leaking putting my baby Ryan’s life in danger as well as my own. The hospital rang my mum and step dad who came straight away to the delivery suite. They were told that I would have to have an emergency Caesarean Section early the following morning.
Just before I went for the operation, a Sister from the Neo-natal care unit came to show us where Ryan would be taken after his birth. Ryan was born at 10:19 am New Years Day (DOB 1/1/11) all the ones. He weighed one pound five and a half ounces (610grammes). When I first saw him he looked like a tiny purple ‘action man doll’ he was so tiny, you could almost see through him. He fought on for a few weeks but then got something called NEC (a kind of infection). This happened twice and each time they managed to stop the infection but on the third time, he was really poorly. Things looked really bad so I got all my family around and as he had not been Christened, I got the hospital priest to say a prayer and christen him.
We where then told he would have to be transferred to Manchester. The doctor came to us eventually and told us that he was really poorly and would probably not make it through the night. As we prepared ourselves for the worst, the Doctor said that she would like to try one more thing. If worked it might give him a very, very, very slim chance! But he had to do his bit! - And fight he did!
This was only the first of many trials he would put us through because a few weeks later his stomach ballooned, turned black and started pushing his internal organs into his chest. He needed to have an operation but he was too poorly! They said they needed to see a small improvement to provide them with a window of opportunity and they got one! Then they were able to do the operation. He came back after six hours, still very poorly and we were told they had to remove almost all of his small intestine. Now he had only 19 cm of small bowel left.
We watched his progress as he seemed to dip, and then come back up, only to drop back down again. It was like being on a roller-coaster.
 As each day passed to us he ‘looked better’ but it was the internal things that mattered really. Every day we saw him he seemed to have improve! But as Doctor Dadey said ‘it’s the long term effects in his life that matter’. Then one day we went visit he had disappeared from his normal room “Where is he we asked?” In room 8 was the reply and there he was. Out of intensive care on CPAP but half the machines were gone and he was showing great vital signs.
After a few weeks in the room 8, we were told he was being moved from St Mary’s to the Royal Children’s Hospital - ward 79 where he stayed until the 19th September, when he came home after my mum and myself had learned, how to administer TPN and his medication.
 He was home for a few weeks but has had go back to the Children’s Hospital with an infection which they have cured with antibiotics.
The good news is that his TPN has been reduced to 5 days a week and now could soon go down to 4 days a week.
Ryan is now a happy little chap who has suffered more in his life than any one should go through who is fast approaching his first Christmas and Birthday.
It was only with the love and support of his family and the dedication and expertise of the Staff and Doctors at St Marys and Royal Manchester children’s Hospital that he has survived and we would like to thank everyone concerned.