My son Garry was born in 1964. I’d been to see my doctor 9 months earlier and was given 2 tablets, one to be taken in the morning and one 12 hours later. I was told that if I didn’t bleed then I was pregnant, and to our delight I was pregnant and had a very happy and uneventful pregnancy.
The birth was difficult, but we were blessed with a beautiful baby boy. However, I knew straight away something was not quite right. I didn’t hear the baby cry, all I heard was a midwife saying ‘it’s a boy’. They quickly allowed me to look at him before rushing him off to the Special Care Baby Unit saying he had breathing problems. In those days, parents and family were not allowed inside the Baby unit because of the spread of germs, so for two days I was only allowed to see him through the glass window.
However, ten days later my husband collected me from hospital and we took our little boy home, but all was not well. He was unable to keep his milk down, there would be projectile vomiting after every feed, which meant he had to be fed a little amount of milk every two hours, and this went on for weeks. I was pleased when the Health Visitor called so that I could explain the difficulty I was having, but her response was of little help; just being told to increase the strength of his feeds. His swallowing did in fact cause problems for the rest of his life, only ever being able to swallow blended or finely mashed up food.
After a few months it became more apparent to us that he wasn’t improving, he wasn’t following the expected milestones for his age. He was very weak, had no muscle tone, his limbs were painfully thin, no attempt to weight bear, he was doubly incontinent. He hardly ever cried, couldn’t speak or make any baby sounds at all. His face was becoming slightly more asymmetrical, a number of his fingers would not open fully, he couldn’t straighten his feet, his testicles did not descend, he had a curvature of the spine. And as time went by the spine was causing more compression to his lungs, which in turn caused him to have recurrent chest infections and pneumonia.
In the early days he was so weak he couldn’t change his position at all, wherever I lay him down that’s where he would stay, but being a positive person, I did not in my wildest dreams think that he wouldn’t get better given time.
As the months went by nothing changed, his swallowing didn’t seem to improve although he did enjoy his food; he was unable to sit up unless propped up with pillows. It was impossible finding a chair that he would be comfortable in, he kept toppling over to one side as the curvature grew bigger.
When Garry was 18 months old we had an appointment with the paediatrician at our local hospital. My husband was unable to attend due to work commitment, so my mother came along for moral support. The paediatrician was a nice man but did seem to have a worried look on his face. Garry was smiling throughout, as he always did. Following an examination and a few tests later, what we were about to hear would change our lives forever. My mother and I had the shock of our lives when the doctor said Garry was not only physically disabled but also severely mentally handicapped, and would need care for the rest of his life. Always thinking that in time he would get stronger and improve with treatment, this was the worse news any mother wants to hear.
As time went on, doctors reassured me that any future pregnancies should be fine, I had another son and two daughters, all three normal healthy children, but this time I did not even think of going to the doctors to confirm pregnancy, in my heart I knew that taking those two tablets had damaged our son.
It was becoming more apparent that Garry’s siblings were reaching their milestones very quickly, feeding well, walking, and talking. Doing all the things that Garry was unable to do, but despite all his problems he was a very happy boy, always smiling and at his happiest lying on the floor, which was the safest place for him, and listening to the soothing music of Jim Reeves.
When Garry was 2 years old it was suggested something needed to be done to correct his spinal curvature, so he was sent to an orthopaedic hospital for about two months lying on a plastercast mould which did nothing to improve his spine.
Following that, the doctors in their wisdom felt a Milwaukee splint was the answer. This was made of hard leather with a softer material on the inside, which was strapped around his hips, from where a metal bar with soft padding on the end extended up to his armpit. The idea was to eventually over time. push his curvature straight. However, this contraption looked like something from outer space. It was heavy and clumsy, and because Garry was incontinent it was impossible to stop the leather from getting wet and soiled; it was a constant battle trying to keep his skin from getting sore.
It became impossible for Garry to continue wearing the splint; what little movement he did have, propelling himself along the floor, came to a stop. So it was then suggested by the Orthopaedic team that he undergo major spinal surgery putting rods and wedges into his spine. The Consultant gave us the very hard choice of deciding whether he should have the operation or not. Both my husband and I thought very hard about it and decided in view of the fact that his deformities were extremely complex his quality of life would remain the same, and the odds of pulling through the operation was 50-50. No further treatment was suggested, it was felt nothing else could be done.
We plodded on caring for Garry as best we could, he was such a happy boy and loved being cuddled which made it all worth while. At nearly five years old Garry had his first epileptic fit, which was the first of many, medication didn’t seem to control them fully. He sometimes had two or three full blown grand mal seizures in one day. It was very distressing for the family to see Garry in these fits, as we all loved him so much.
During these early years we had to make several trips to various hospitals including Alder Hey Children’s Hospital in Liverpool, and the Orthopaedic Hospital near Shrewsbury. It was during his stay in the Orthopaedic Hospital that the Ward Sister accompanied by a Doctor called us into her office and said, “You can leave your son here now and forget all about him, go home and start your life afresh, we have a place where he can be sent to”. Before she even finished her sentence my husband waded in with a resounding “NO, we’re taking him home Now”.
As the years went by daily life was very difficult, Garry was still in nappies, the chest infections continued, the seizures weren’t controlled, and feeding was still a problem. He was also getting heavier which made it difficult to lift him up off the floor, and carry him upstairs to bed or for a bath.
However, Garry was nearly 8 years old when I discovered that a new hospital for adults with mental disabilities had opened only half an hour’s drive from our home. I wasn’t sure whether physically handicapped children were accepted there, but my mind was conjuring up thoughts of Garry being accepted, and I would think of it as a boarding school, Monday to Friday, and he’d be home at the weekends.
I wasn’t going to let this opportunity go by, so contacted the relevant people and practically begged them to allow him to stay there Monday till Friday. The hospital was built on one level, about a dozen small separate units, and one of these units did in fact cater for the physically handicapped. I was over the moon; it meant that I could now devote more time to my other three children and still have Garry home at the weekends.
He seemed to be happy there, the staff would take him out around the beautiful grounds, the songs of Jim Reeves were still played for him and life went on like this for a number of years, Garry’s spinal curvature grew much bigger making it harder for his lungs to expand, therefore more chest infections. Many times we had telephone calls to say he was having breathing difficulties, we would drive over always thinking the worse might happen.
Garry was still having his weekends at home. I would drive over and collect him on a Friday afternoon after picking up the other children from school, then take him back on a Monday morning. This arrangement worked well for years until it became noticeable that he wasn’t settling as well when at home, we thought this might be because he missed the hospital routine and staff.
Years later the Government brought out a Bill called ‘Care in the Community’ which meant Garry would be placed in residential accommodation with carers attending to his needs 24hours a day. Fortunately, this accommodation was a bungalow approximately an hour’s drive from our home.
He lived there for a number of years with two others of similar age. He was well cared for, having his own room which we decorated with his toys, a few ceiling mobiles, posters and photographs to make it homely and cosy.
He continued to have fits, still unable to walk or talk, feeding was still a problem, in fact as he got older his swallowing gradually got worse, frequently choking on his food. With help he did learn to hold onto a spoon and eat by himself of a sort.
The staff were good and very kind with Garry, he was such a loveable boy, everyone who knew him just adored him. Unfortunately, he continued to have chest infections with many emergency stays in hospital. Over time he did get physically stronger and a wheelchair was adapted with moulded padded plastic made to Garry’s shape. This was wonderful, he learnt how to turn the wheels of the wheelchair, he didn’t have the strength to push forward but was able to go backwards and get around the bungalow. He came along well, even being taken on holiday to Butlins with the staff for a few days.
His feeding and choking was becoming more of a problem and I had a call to say the Multi-disciplinary team, physiotherapist, dietician, district nurse, and the carers wanted a word with me. I met with them a couple of days later who informed me that it was becoming impossible to feed Garry, his choking when eating was becoming life-threatening and they felt the only answer was a peg feed, which meant a feeding tube inserted directly into his stomach. This, Garry would have hated, he loved his food, there was very little else for him to look forward to. It would mean no further food by mouth.
In the past when Garry was unwell I had always stayed with him overnight in hospital because I felt the nursing staff did not understand or had the time to attend to his needs. He couldn’t tell anyone if he felt uncomfortable and needed his position changing, or was thirsty and needed a drink, people tended to walk past him not sure how to react.
Before arrangements were made for the insertion of the feeding tube, I had another phone call from the carer at the bungalow to say Garry had been taken to hospital but this time he wasn’t responding to treatment. After all these years, was this the call I’d been dreading?
My husband and I rushed over to the hospital to find Garry lying unconscious in a side room. He had a saline drip keeping him hydrated. I didn’t think he looked as ill as I’d seen him during previous hospital admissions. A nurse came in and said he wasn’t responding to treatment, he had pneumonia; it was a matter of waiting to see what would happen.
I naturally stayed there with him overnight, the staff kindly put a reclining chair for me next to his bed. Garry slept and didn’t move all night, his breathing wasn’t laboured as it had been in the past and in the morning there was nothing I could do for him other than give him a little wash and make him comfortable.
That morning many family members came to see him, I think, all sensing that this could be the end. My son who was in the Air Force and stationed in South Wales managed to get leave but it was a 5 hour journey up to North Wales.
Garry’s sisters, my husband and myself stayed by his side the whole day only leaving to grab a cup of tea. At almost 5 o’clock that afternoon Garry stopped breathing…. minutes before his brother arrived from South Wales which was devastating.
Garry was buried 5 days before Christmas 2001 at the age of 37 years.
How different his life would have been if I had not been given those dreadful tablets
