Charlie’s Story

Charlie was born 4 days overdue on the 28th August 2008.  Due to prolonged labour with no progression and a drop in Charlie’s heart rate, he ended up being born by emergency caesarian section.

On day 2 he began being sick which was dark green bile stained.  He was transferred to NICU were they stopped his feeds and gave him IV fluids to keep him hydrated.  They slowly re-introduced his feeds again via an NG tube in his nose and also a little by bottle.  Then finally on day 12 he was up to full feeds and they allowed him to come home with us!!

Within a few weeks we were at the GP as Charlie was constipated and struggling to open his bowels.  We were given lactulose to try and help with this. By December 2008 when Charlie was just 4 months old, we were still struggling with him.  He would projectile vomit bottle feeds back and not open his bowels for days at a time. He also had a distended abdomen. We went to our local hospital were they gave him rectal enemas but nothing seemed to work.

He was transferred to Manchester Pendlebury Children’s hospital in January 2009 as nothing seemed to be helping Charlie. They began doing rectal washouts twice a day to try and flush the large bowel out, these seemed effective for a short time and we were sent home and continued to do this at home, but soon started running into problems again including constipation, sickness and distended abdomen so Charlie was re-admitted.

By March 2009 nothing seemed to be working for him so they decided to operate on Charlie and they gave him a colostomy stoma.  After the operation it didn’t function much then just a few weeks later it prolapsed and he had to go back to theatre to have it reformed.  By this point he had lost a lot of weight due to not tolerating his feeds along with the sickness so they then put his first central line in and he began to get all his nutrition via this (TPN –Total parental Nutrition) He then had to have more surgery to remove adhesions that had formed through his bowel due to all the scare tissue.

During this time Charlie had formed a really bad aversion to feeding and would gag when we tried to feed him. They then inserted a gastrostomy into the stomach so we could put milk directly into his tummy.  At the same time they put a mickey button into his Secom(beginning of the large bowel) (secostomy) so we could wash the large bowel out to empty it as his colostomy stoma never seemed to function well.

The washouts worked to a certain degree but he was still very distended and struggling with enteral nutrition.  Charlie had many x-rays and other tests to try and figure out what the problem was, they all showed that due to lack of peristalsis there was a lot of air/gas in Charlie’s bowel which led him to having such a distended abdomen.

Charlie was then referred to Dr Thapar at Great Ormond Street Children’s Hospital in June 2010 where he had some investigations done.  These included full stomach and bowel monometry, EGG for the bowel, Colonoscopy, gastroscopy and short segment biopsies.  The results showed that Charlie’s large bowel had no peristalsiswhatsoever and the stomach and small bowel were functioning but not as strongly as they should be.

He had several episodes were he became very unwell and his weight gain was poor due to recurrent episodes of vomiting and the stoma not functioning. It was decided that Charlie would have an ileostomy stoma in his small bowel and we would stop using the large bowel completely due to lack of improvement in his health.This was done in March 2011. Charlie then developed an ulcer in his stomach that was actively bleeding.  He was reviewed by an adult specialist who said that Charlie had one of the biggest ulcers she had ever seen even in adult patients.

He lost a lot of blood and had to have several blood transfusions.  They tried to stop the bleeding in different ways and after 3 theatre trips it was finally corrected and sorted.

Charlie suffered with several line infections, blockages and  blood clot during 2011 leading to central lines having to be removed and replaced.

He was constantly on different antibiotics that were given via the central line for long periods of time and constantly had a fever that was unmanageable and made him very ill.  He was transferred to High Dependency Unit and Intensive Care on a number of occasions that resulted in him being ventilated to try and let his body recover.

We were constantly trying to increase his enteral intake of milk feed via his gastrostomy in order to reduce the TPN.  We completely weaned Charlie off TPN and he was managing on just his enteral nutrition via gastrostomy.  He would then have an episode of vomiting and the stoma not functioning that led to him having to be put back on TPN.

In June 2012 we came to the problem that Charlie had had so many line infections, blood clots around lines and line blockages that we were running out of veins to use to insert central lines to give him his TPN.  Manchester actually had an unsuccessful attempt in inserting a line. That was when he was referred to Dr Gupte at Birmingham Children’s Hospital.  They managed to insert another line for Charlie but said it would prove more and more difficult to manage Charlie’s nutrition due to the problems we had already faced at his young age. It was then suggested that Charlie be assessed for Small Bowel Transplantation due to the fact his nutrition was unmanageable due to ill health.  This was done over a two week period in August 2012.

The conclusion was that we would try one last time to try and wean Charlie off TPN and get his milk feeds up via gastrostomy so we could give him full nutrition this way so he didn’t need the TPN. Ever since the Transplant assessment in August 2012 Charlie has really turned a corner!  He started full time school in September 2012 and we have just weaned him completely off TPN (August 2013) He now receives all his nutrition via his gastrostomy.   We try to treat him as normal as possible in relation to oral intake.  He takes a packed lunch to school and sits with his friends at lunchtime but rarely eats any of it.   He has a feed in school and gets most of his nutrition during the night via a pump that infuses over 12 hours.

He still has small episodes of abdominal distension and experiences pain because of this and he can become tired easily.  We believe that regular movement and exercise could help as the problems seem to go away quicker than when he was younger.

We are hoping that the older Charlie gets the more manageable his condition will become. We are so very proud of how Charlie has coped with the challenges he has faced so far in life, after 26 operations and months in hospital he is still a very happy smiley little man – known fondly by our friends and family as Our Warrior – A true inspiration.

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