Albert was born a healthy 7lb baby at full term. Within 6 hours he was quickly put under the lights due to severe jaundice and as he was on his back in the incubator, we noticed that there were wet patches either side of his ears all the time.
Each time I breast fed him he would vomit up the milk. Five days later we took him home and that’s when our ‘bowel’ journey really began. By week two Albert would turn blue every time we laid him down, rarely slept, vomited a lot and would bubble constantly from his mouth whilst making a very noisy wheezing sound.
At five weeks, he stopped breathing and was resuscitated by our neighbour, thankfully a retired doctor and rushed into St George’s Hospital. Severe Oesophageal Reflux with Apnoea was diagnosed and medication was started. Albert barely put on a few ounces a week and continued to struggle for breath, turn blue, scream in pain and eventually we were admitted into Chelsea & Westminster with Failure To Thrive.
He was given a nasal gastric tube and fed using Neocate, but it was then that things really took a more dangerous turn. He rarely opened his bowels, was continually turning blue and struggling to breathe and the vomiting became uncontrollable. We never laid him down and kept him upright in his buggy all the time, this continued until we stopped enterally feeding him in 2012 – sleep didn’t even feature.
In September 2007, Chelsea & Westminster finally said we had to come in as his weight was only 9lbs at four months old. We refer to the first week of Albert being in hospital as the Week of Hell. Every consultant we came across diagnosed him with another condition – Laryngomalacia, Fenestrated ASD (eight holes in his heart), unsafe swallow, fluid in his brain where they should be functioning White Matter and worst of all, we realised that Albert had been actively ‘de-stating’ to levels of 60% oxygen and below up to 20 times a day with periods of where he would stop breathing all together. He was weak, painfully thin and barely with us. The nasal gastric tube was put further down into his small bowel, but minutes after the insertion of the tube, he would struggle to breathe. His large colon rarely worked in spite of enough laxatives to sort out an elephant and his pain and weight continued to become uncontrollable. Eventually Albert was fitted with a Hickman Line and started on Total Parental Nutrition. He had an operation to partially correct his Larynogmalacia to help him breathe – we wanted to avoid an opening in his throat.
We lived in hospital for the next ten months – tests after tests, a few operations, many resuscitations and a life trying to manage our daughters Lilly and Heidi and their lives in hospital and work. Eventually Albert went into Liver Failure and a jejunostomy tube was fitted for enteral feeding so as to help the liver recover and get him off TPN which was causing his liver to fail. A few months later we finally got home on him being tube fed into the small bowel over 24 hours.
We barely lasted a month before Albert became very unwell and it was discovered that the jejunostomy tube had ‘kebabed’ his small bowel and he faced yet more surgery to repair the holes and reposition the jejunostomy. A trial period at home saw our son’s weight plummet to 11lbs and at 16 months Albert was readmitted a month later.
We lived in Chelsea & Westminster for the next two years with on and off small breaks at home. He had further surgery to insert a supra pubic catheter as his bladder did not function and various input from other medical professionals as he has low muscle tone, vision impairment, liver disease and a heart problem. He was also unable to sit, crawl or walk. Finally it was agreed that Albert could only manage on TPN and we spent a number of months trying to get him home with his Intravenous Feed eventhough we did not have an official diagnosis as back then, it was very unusual to bring a child home like Albert especially as nothing was going into his small bowel and this was extremely dangerous. His liver still posed many problems but finally a new much safer TPN was licensed and Albert started on Smoff straightaway and all enteral feeds were stopped.
Great Ormond Street diagnosed him with Intestinal Failure due to non functioning muscles and nerves throughout his bowel in October 2012, but not before we had endured endless admissions into hospital trying to get him to feed through his jejunostomy which had caused many Hickman Line infections and near brushes with death due to infections and his endless list of drug allergies.
He is now fed only by TPN over 20 hours and we use three other tubes to drain his bladder, small bowel and stomach to keep him safe as he cannot manage to get rid of his enteral fluid himself. His large colon does not function at all, but due to his severe allergies to many, many things, it was agreed he could not have an ileostomy which would help him and we were finally discharged with a pain management, quality of life and optimise feed status in October 2013. It was a relief to be able to put a name to our son’s condition, but quickly realised that we were pretty much alone in the community and the world of bowels. Our hopes for a small bowel and liver transplant were stopped when we were told that due to his allergies to many drugs used, Albert would not survive the surgery and the subsequent transplant drugs used and Kings College Hospital said he would have more of a chance surviving longer if we just took him home and hoped the TPN would keep him going. He is now starting to show more aggressive allergic signs toward the two antibiotics that are safe for him. Dressings and tubes used on is body also cause real issues too.
Albert started mainstream school in September 2012, Christ Church in Chelsea, it was a fight of three years to get Lambeth to agree that Albert needs a Special Education Needs Statement due to his medical issues, but this year he started Year 3 with a Teaching Assistant and of course his ‘right hand’ nurse Amanda (Ma) who has been with him for five years. He has had three life-threatening Hickman Line Infections as the gut bugs love the plastic in his body and every Christmas so far has been a roller coaster of life and death. In February 2014, Albert had his gall bladder removed together 127 gall stones, a side effect of the old TPN as is his extra large spleen and liver disease.
Each year will always involve brushes with death, endless admissions and appointments and we are never far from the next medical intervention or crisis. Our medical challenges are always on the agenda and we are finding more issues with his little body. Emotionally, he is starting to understand his body is different and this poses a few tricky and difficult conversations. However, Albert’s stoic nature, shear will to be a normal 7 year old little boy makes us smile everyday, gives us challenges we never even thought about and in spite of the tears, pain and exhaustion, we have all now settled into our family life and make a point of living life to the full and having fun. Albert loves football, the trampoline and surfing and he tells us everyday that when he grows up he wants to be a Fire Fighter.
Thank you for reading our story.