A Different kind of Childhood

I'm Shaun, and I’m an adult with VACTERL.​
I was born at the Royal Hampshire Hospital in Winchester. My mum was induced on the 13th of February 1994 because I was two weeks late. The birth went normally, however, the following hours were far from it. My lips would go blue, and I needed suction to keep my throat clear. There were a few close moments, and it was very touch-and-go; on one occasion, I required resuscitation. After being seen by three consultants, my parents were informed that I had complications. I was taken to the Paediatric Intensive Care Unit (PICU), where I was baptised just in case. I spent the rest of the night there and was taken by ambulance to Southampton General Hospital the following morning.
 
 I was thoroughly inspected and tested, after which a paediatrician sat down with my parents and explained that he believed I had Anorectal Malformation (ARM), Tracheoesophageal Fistula (TOF), upper thoracic scoliosis, and a limb anomaly.
​In the next few hours, I had my first operation: a successful attempt to disconnect my oesophagus and trachea and create a temporary stoma.
 
​However, my TOF repair split, and a second attempt was made. Unfortunately, this also failed, so the decision was made to perform a gastric transposition (bringing my stomach up into my chest). Growing up this has lead to ongoing acid reflux, difficulty gaining and maintaining weight, and dumping syndrome.
 
​As the weeks followed I recovered sufficiently, so a central line was fitted to assist with gaining weight to improve the success of the next planned operations. Having ARM meant I was born with a high imperforate anus (I did not have an opening), as well as a connection between my bowels and urethra that allowed stools to enter my bladder. This was successfully repaired through the Posterior Sagittal Anorectoplasty (PSARP) method, but it meant a long time in intensive care with no physical contact. This had a huge impact on my parents, as contact was only allowed for the occasional washes, and were supervised as I had a number of tubes and wires.
 
 I remained with the colostomy to allow the repairs to heal, and was reversed a few months later. It was hoped I would develop bowel and bladder control, but by the age of seven, I was still in nappies, which made school hard. My nerves are tangled at the base of my spine, which caused me to remain incontinent. Having no bowel or bladder control led to a difficult choice: undergo surgery to have a permanent colostomy and a Mitrofanoff (a small stoma on the abdomen through which a catheter can be passed to empty the bladder), or stay as I was. I chose to have the operation, which is a decision I struggled with through my adolescent years.
 
At the age of 16, I asked my consultant to explore the possibility of reversing the colostomy. Assessing whether new technology and techniques would make it feasible. After many invasive and uncomfortable tests and procedures, it was confirmed that it was very likely to fail if a reversal was attempted.
 
At the age of 30, after many years of issues with the bottom end of my remaining bowel. I was referred to St. Mark’s at Central Middlesex Hospital in London. Where they completed a panproctocolectomy (surgery that removes the entire colon, rectum, and anus).
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Growing Up with VACTERL
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My childhood mainly consisted of long hospital stays, outpatient appointments, unpleasant tests and procedures, and a considerable number of operations.
 
Obviously, this made socialising and developing friendships difficult. My parents managed to find a nursery that would take me one day a week; this gave them some much-needed respite and allowed me to spend time doing normal childhood things, like socialising, playing, team building, and, of course, learning to share.
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I spent a lot of my early years being prepared for the next big operation. I know there were several where my survival was unlikely, so I was taken to see family and friends. As the years went on, my hospital visits became less frequent, and I spent more time at home and eventually at school! My first few years were quite different compared to those of my classmates, as my mum would have to come in and change my nappy. This obviously led to my peers asking questions, which I would try to cover up. I kept my condition a secret right through until college (even then, it was only shared with close, trusted friends). Things got a little easier after my colostomy and Mitrofanoff. However, I missed out on nearly a year of school due to that operation, and I also missed a lot of time for follow-up procedures.
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Secondary school was definitely a lot harder. I always knew I was different, but I truly came to understand how much during this time. I went through a dark period and struggled with depression, as I hated how I was affected by stoma leaks and by not being able to take part in regular childhood activities.
However, I managed to find a friend I could be open with, which helped immensely.
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Highlights of My Life So Far!
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After my childhood, my life started to resemble something more 'normal'. I went to college, and that is where I met my wife. We were married in September 2023. I also have a full-time job. My condition still affects my day-to-day life, but I have learned how to manage it. I am now much more open about it, whereas I never would have dared to 'go public' during my teenage years.
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I have even been able to travel abroad, including a trip to Australia. It was complicated, as I had a mountain of supplies to pack alongside three weeks' worth of medication, but I did it. It took my family taking an additional case purely for my supplies.
 
​I love spending time outdoors, going on hikes, and exploring nature. I also love music and play the guitar whenever I have free time. I'm living life each day as it comes!"