Clear Plastic, a cot with tubes, a smear of crusted blood, and my little brother inside-my best friend, arms and legs motionless.
Christopher was born with Down syndrome in a small hospital called the Waveney, in Ballymena, Northern Ireland, marking the beginning of a friendship that would shape my life. It was 1984.
For many parents, having a child with a disability arouses feelings of anxiety, sadness, and punctured excitement as they grieve the loss of what could have been a healthy newborn. This is a time of fear -- both fear for oneself and for one’s child. My parents were no exception.
For the first time, I recently asked my father about his and my mother’s feelings at the time of Christopher’s birth. I discovered that my mother was alone with the hospital staff having a caesarian section. In those days it was less common for men to attend the birth of their child. My father phoned later in the day to find out how the delivery had gone, and the midwife told him that he’d had a beautiful, little boy but that – before coming – he should call in with Dr. Lim, the paediatrician. Dr. Lim explained to my father that Christopher had Down Syndrome. My father said he felt shocked but added, “This is your child. There’s nothing you can do. You can’t throw the child in the bin. You just have to get on with it.”
These are strong words. Now, as a doctor, I recommend talking to your paediatrician or general practitioner about how you feel. At the time, I was only eight, and my new younger brother was a wonderful novelty as far as I could see. When Christopher came home to Cookstown to join the family, I was proud and excited. I noted with interest that he had to be bottle-fed because his tongue was bigger than most babies. My parents discussed with the doctors whether Christopher should have surgery to make his tongue smaller. I even remember my mother talking about a surgeon in Israel who was the first doctor to perform this operation. Ultimately, my mother was unwilling to take a risk with Christopher’s life for what she described as ‘an essentially cosmetic procedure’. I also remember her saying that the size of Christopher’s tongue was an important cue that would help people realise that he had a disability – that he was different. She decided not to have the surgery done - at home or in Israel.
Next, we entered the blue period. About two weeks after arriving home, while the excitement was still palpable, Christopher began vomiting and having ‘episodes’ where his skin turned a dusky, blue colour. I remember my mother’s alarm. She was sitting in the living room giving Christopher his bottle. She had permed hair and was wearing the all-blue tracksuit that my grandmother had brought her from Canada. Suddenly, she stopped feeding him and began rubbing his back, repeating, “Christopher” with urgency that scared me. My mother was in shock; she later told me that Christopher’s face had changed colour from white to dark blue and then back again to white.
My parents rushed him back to The Waveney hospital. An X-ray showed his heart was enlarged, which led to his transfer to The Royal in Belfast, more tests and the discovery of a hole in his heart. He had an initial operation, resulting in a few, two-centimetre scars on his chest. My parents agreed with the doctors that he should have the major heart surgery when he was older.
For the next five years, Christopher and I spent a lot of time together. He slowly gained good head-control, started walking and developed other important skills, such as the ability to pull every last tissue out of the tissue box at lightning speed. He also liked to express himself artistically by taking off his nappy and using it to do some eco-friendly graffiti over the bare, white living room walls, much to my dad’s displeasure. Picasso would have been proud.
Although Christopher’s speech was delayed, he managed to communicate effectively with some sign language and pointing. He loved to drink fresh orange juice, and he drank at least one glass per day. When one of our neighbours said that if Christopher wanted juice he would have to say the word, my little brother did exactly that! Not too many people can say that their first word was “juice”!
Christopher and I had become best friends, though I did pose a bit of a risk to him at times. Before he was a year old (and long before yoga became fashionable), I had him by the feet teaching him to do headstands. Trying to close the front door after removing the obstructing curtain, I realized I had shut Christopher’s fingers in the door. Taking Christopher for a ride on the back of my bicycle, I thought the brakes had jammed, only to find that I had caught his foot in my bicycle wheel! After I raced him around at high speeds in his buggy, my mother gently explained that children with Down Syndrome have unstable necks; I suddenly realized I had to be more careful with Christopher.
Having children had made my mother fearful that something could easily happen to them. They could die in an instant when you weren’t looking. She passed these concerns on to me – her daughter, but also one of Christopher’s primary carers – with stories and advice for what to do and what not to do. Mostly she was concerned about choking, as my older brother Steven had almost choked on a hard-boiled sweet, and despite being a doctor my mother had instinctively used her finger to scoop the sweet out and almost made the situation worse.
When I wasn’t looking after Christopher or playing football on our street, The SAS Survival Handbook by John Wiseman kept me busy for hours. I was preparing for the possibility of nuclear fall-out (the radioactive kind), learning how to scare off sharks (I didn’t ever want to look like turtle bait) and memorising an emergency procedure called a tracheotomy. I thought a lot about having to do a tracheotomy and memorized each step. I enjoyed telling people that the little hole in the side of the Bic pen was there just to be used for this procedure.
When I got to secondary school, I discussed it with my hockey coach because I was worried that someone would choke on their own tongue while playing hockey and die. It had almost happened on ‘Match of the Day’ and Jimmy Hill talked about it like it could happen to anyone. Fortunately for Christopher, he had a big sister who was prepared for anything.
When he turned five, the time had arrived for Christopher to have his open-heart surgery to repair the hole between the two, large pumping-chambers of the heart. Today, most babies go through this surgery not long after they are born, but my mother had hoped that Christopher could wait as long as possible.
I remember being 13 and walking into the brightly lit intensive care unit of the Royal Victoria Sick Children’s Hospital, Belfast, to visit my little brother after he had come out of the operating theatre. He was wearing a disposable nappy, his body bare and vulnerable. He lay there in an open, clear plastic cot, with tubes coming out of his nose and arms. His limbs were motionless, and a small, dry smear of dark blood on his chest drew my attention. I stood at his right side. His eyes opened and he looked straight at me. He smiled widely and slowly. The tears squeezed their way to the front of my eyelids, and my throat grew tight. My mother asked me to wait outside. She was upset. I couldn’t believe I had let her down and felt embarrassed that I hadn’t been brave enough to talk to my little brother who needed me.
I wandered around in the main corridor lost and sad, before deciding to walk down to the ‘Clarke Clinic’ ward where Christopher had slept the night before and where we had left his belongings. As I walked onto the ward, there was a loud alarm, and people were rushing past me to a cot where a tiny baby lay. While they surrounded the baby, I turned around quickly and left. Later that night, I remember my mother standing outside in the cool, winter air, speaking to the little baby’s mother. My mother was consoling her, telling her everything would be OK and that it was in God’s hands. Life had never seemed so fragile.
My mother visited Christopher every day after work, driving two hours round trip. Without fail, my mother’s good friend Mary Smith accompanied her. My older brother and I visited on the weekends with my dad, and we became regulars at the Bostock House canteen. A few weeks after the surgery, while still in hospital, Christopher developed a narrowing at the top end of his windpipe, meaning that air couldn't pass in or out of his lungs. He was slowly choking. This can occur in children who have been ventilated with a machine during a long operation. He returned to theatre to have a tracheotomy, a procedure to create a small hole two centimetres wide at the front of his neck. A curved plastic tube called a trachy or tracheostomy was inserted into this hole and was fixed in place with a flat, white cord tied around his little neck like a bow tie. He could breathe. It was just as the SAS survival handbook had said.
It was not long before Christopher was home, accompanied by a heavy, portable suction machine the size of a shop checkout till. One of the nurses showed us all how to suction out his windpipe using this machine to prevent the tube from clogging. This involved attaching a thin, floppy catheter, 30 centimetres long, to the machine, and inserting the other tip through the trachy-tube in Christopher’s neck and then down into his windpipe. Sometimes the saliva would dry up and obstruct the tube, making it impossible to pass the catheter through the tube. In these situations, I wondered how the air got in or out, but it did.
We changed the tube daily. Christopher was wrapped in a bath towel, like an Egyptian mummy, to stop him using his arms to fend off whoever were removing the tube; he did not like this procedure. I must have asked my mother if I could help, and she must have agreed. So, at some stage during this year, I was able to clean the skin around the tracheotomy, cut the ties and remove the tube while my mother or father replaced it with a fresh one. I was thirteen. The medical training had begun.
There were all sorts of problems with Christopher’s trachy-tube. One day I was watching my mum and dad as they began the process of changing the tube on the living room sofa. It was winter, the fire was lit and this was the warmest room in the house. My mum had just cut the tie with the sterile scissors and my dad was getting the new tube ready; no one was holding the old tube in position. All of a sudden, a violent sneeze burst from Christopher’s lungs and the old tube shot straight out into the air. I spun around to face the fireplace and put my head in my hands, instantly thinking he could die, and then turned slowly back to see what was happening. There was a tone of panic in my parents’ voices. My dad had grabbed the new tube and was shoving it into position. There was a little blood, but the air was flowing once again.
Despite my fears that the trachy tube would get blocked or covered over at night with a blanket, it did not. Apart from swimming, which for obvious reasons was not allowed, Christopher got on with life just fine. He even endured a year of bad hair, as my mother reluctantly performed home hairdressing to make sure no strands entered the opening to his tube. After one year, the trachy-tube was removed and the hole closed over.
Eight years later I was back in the Royal Victory Hospital, standing in the Clarke Clinic Ward, doing my paediatric clinical exam as a fourth-year medical student. I was asked if I knew any reasons why a child might need to have a tracheostomy tube? I did.