Read about Charlie's short bowel survivor story
Charlie Anthony Beech was born at 26 weeks + 5 days at Wythenshawe Hospital on the 23/05/2008, weighing just 2lb 5oz. For the next 5 weeks Charlie remained in Intensive Care, his progression was turbulent, we had a few ups and downs but he managed to overcome them, unbeknown to all of us what was just around the corner, we were heading for a parent’s worst nightmare which changed our perception of parenthood in an instant. On the 29.06.08 Charlie’s health deteriorated rapidly, we received a phone call early Sunday morning asking us to come to the hospital. Charlie had become extremely unwell overnight. On arrival Charlie had been ventilated to help sustain his breathing and had to be put on very strong antibiotics whilst the doctors tried to diagnose his condition. We stayed at the hospital all that day and overnight, sleeping on the hospital couches in the parent’s waiting room. By early morning his stomach had turned black and swelled significantly. At around 8.00am on 30.06.08 the emergency response team were called to stabilise him and transfer him to St. Marys Hospital, Neo-Natal Surgical Unit (now part of The Royal Manchester Children’s Hospital).
Surgeon, Mr Bruce and a consultant, who we now owe a debt of gratitude too, sat us down and told us the worst, they would have to take Charlie straight to theatre to undergo and emergency life saving operation. We were devastated, in shock as every parent would be, but to be honest we knew he was in a very bad way so the options were limited. We could not sit in that tiny waiting room with no windows for any longer, it was suffocating, we had been waiting there for what seemed like an eternity whilst they stabilised Charlie in preparation for his surgery. We went in to see him for what we thought was going to be our last time, words cannot describe the emotions we felt at that moment, it was totally unbearable but it’s something as a parent that comes naturally, to want to comfort your child. We said our goodbyes and decided to drive home and back to pass time, and to prepare ourselves for the worst, but to be honest no preparation in the world could prepare you. We didn’t say much to each other and just waited for the phone call. I must admit that was the most terrifying phone call/experience we’ve had, and hope will be the last that we ever have to go through. But the misery we were experiencing was miniscule in comparison to Charlie’s condition.
Around 3 hours later we received the call in the car whilst driving back on the motorway, amazingly we were told Charlie had survived, he was critical but stable. The illness was diagnosed as a severe case of Necrotising Enterocolitis “NEC” and Volvulus, as a result they had to remove the majority of his small intestine. On our return to the hospital we immediately went to see our son in the intensive care unit, he had so many wires, lines, cannula’s, medicine being pumped in to him it was difficult to look at him. Due to the trauma of major surgery he had doubled in size due to oedema, which is fluid in the body post op. To keep us informed of Charlie situation we were taken aside and given a very detailed account of what we were dealing with, I remember it all so well. Charlie was left with 30cm's of bowel which they brought to the surface of the skin (this is called a stoma). As you can imagine all this was raw to us as parents, never in a million years did we expect to be in this situation, let alone our son who we had bonded with beyond compare even though we had not even had the chance to take him home. It’s a very overwhelming experience when you start to absorb the realisation of what you have just been told, as a parent, especially for your first child you never contemplate being in this scenario.
The only advice I can give is that events just unfold so quickly that you don’t really have much time to think, it’s just complete auto pilot and you have to roll with the punches and be strong for each other and most importantly your child. I must say the doctors, nurses, consultants, basically everyone involved were fantastic that day, we were reassured all the time to stay strong, and that they could see Charlie was a fighter after what he had already surpassed. Again a debt of gratitude we owe to all the staff at St Mary’s that day, it’s a cliché but words cannot describe the life saving work these people do on a day to day basis, it’s truly amazing.
Post operation, he was in a critical condition and it was touch and go whether he would survive. The next 96hrs would prove critical as he recovered from surgery. We were allowed to stay at the hospital in the parent’s accommodation for the next 2 weeks following. It was a long hard drag for the next few months,
Charlie had been set to have his 2nd operation on the 21/08/2008. This is when we were introduced to Mr Morabito, a pioneering Bowel specialist leading the way in this type of surgery, he would go on to be a very very special and well respected person for our family and I expect many others.
On the day I remember feeling very anxious, but that was to be expected. But for some reason I didn’t feel comfortable with how Charlie was behaving that morning, when they say parents have a sixth sense about their children, a natural instinct, its completely true. I was holding him pre op when he suddenly stopped breathing, the nurses quickly resuscitated him and went into action along with the doctors to stabilise him and find out what was the cause. In the end it was diagnosed as a line infection (the feeding tube that pumps TPN direct in to his heart). Grand positive & grand negative infections both at the same time, the positive one being the more serious of the two. He was put back in intensive care and again administered strong antibiotics. Once again he battled away and managed to fight the infection, it was a sight we had become so used to seeing, we just kind of expected him to recover and move on to the next challenge.
On 03.09.08 Charlie was booked in again and taken to theatre for a 2nd operation with 3 possibilities, A) Stoma reversal B) A Bowel lengthening, C) To Create a 2nd Stoma. After a couple hrs in to the surgery a theatre nurse came to see us with some very good news. Thankfully option (A) was a success, his bowel had grown by 12cms, and therefore the stoma was reversed. This was a massive breakthrough for Charlie and all concerned. As a result of the trauma to Charlie's digestive system, we were warned from the very beginning that it was going to be a long road ahead with many ups and downs. The part of the intestine that was removed is responsible for absorbing nutrients from food and we were told that Charlie was going to struggle to put weight on in the future.
On 12.09.08 Charlie was transferred to Pendlebury Children’s Hospital (now part of The Royal Manchester Children’s Hospital). A week after being admitted Charlie contracted the hospital superbug C-Diff. This meant he had to be placed in a quarantined room away from the other patients. We stayed with him day and night for 48hours, sleeping on recliner chairs next to his cot. We decided this was not a practical arrangement and made what was a brave decision and requested we care for Charlie at home. After discussions with the doctors, they agreed and we were shown how to administer his antibiotics/medicines, and brought him home that evening. As Charlie's parents, we feel this was the best decision we made for him, as his condition improved due to the constant care we provided him 24hours a day, 7 days a week.
In the following months Charlie had problems with his bowel movements and was excreting, on average, 15 times a day, which meant that food was passing straight through his bowel with minimal absorption. Consequently, this resulted in very loose stools, limited weight gain, permanent nappy rash, passing blood through the rectum and several outfit changes and baths a day.
Prior to Charlie being discharged from Pendlebury, his surgeon and dietician prescribed him a lactose free, milk substitute formula (Pepti-Junior) and due to his very frequent bowel movements, prescribed him Loperamide (Imodium) with a view to decrease the movements and harden the stools. These prescriptions were on top of the many other antibiotics/medicines he was taking on a daily basis. As a result, his bowel movements slowly started to reduce and his weight increased over the forthcoming months.
As a baby and toddler Charlie was a very fussy eater and was not very good with new textures. His food had to be well blended and he did not tolerate lumps very well. Over time this has settled however there are still certain foods (mainly the healthy ones!) that Charlie will not entertain at all. However, he has a great appetite and can eat a lot of the foods he does like. He tolerates foods which have cow’s milk in them ie yogurts, cheese, mashed potato etc.
As a result of his prematurity and due to the nature of the drugs he was prescribed whist he was poorly, Charlie is also Deaf. At the age of 3, in September 2011, Charlie was given a Cochlear Implant. He is progressing very well with his implant and loves hearing new sounds! He is going to our local Deaf specialist school (Thomasson Memorial School), where he will be well supported.
Due to our communication difficulties and Charlie’s general development delay, toilet training is something that we are currently working on but is proving challenging for us!! Thankfully his bowel movements have calmed down significantly and Charlie is delighted with himself when he has been on the toilet.
19th August 2012. Charlie is now a lively and lovely-natured 4 year old little boy. He is a social butterfly who loves to be amongst other children. Whilst he still has that fiery temper and a steely determination, he is a happy young boy who loves life. He is due to start school in September 2012.
Finally we would just like to say thanks again to all the people who were involved in Charlie’s care during his stay in three different hospitals, we met lots of new friends, many of who we are still in contact with. This includes families form St Marys, some of who went through an extremely unfortunate life experience, totally inconceivable and for that they are truly inspirational and astonishing people!
As a family we would like to say a special thanks to Mr Morabito for his compulsive determination for the treatment of Short Bowel illnesses. His dedication to advance the treatment, care and well being of children is phenomenal to say the least!
From Nicola, Tony & Charlie we would like to say a very special thank you! .
Tony Beech and friends at DS Smith Recycling are running the Cardiff Marathon on 14th October 2012 in support of Short Bowel Survivor and Friends you can support them by donating on line at: www.virginmoneygiving.com