In my professional life I worked with families who had children with special needs. My specialism was deafness but, since the control of rubella, there are few babies who are just deaf; deafness now comes within a range of complex needs. New technology makes it possible to diagnose deafness at birth, so this is often the first of the special needs that can be addressed, consequently the Teacher of the Deaf is often the first professional to be appointed to work with the family.
Over the years I have seen more babies survive with conditions that would have defied medical intervention even a decade ago. Modern medicine is amazing but is it always right to use it? I have just had a pertinent reminder of the consequences of saving severely damaged babies. My doorbell rang and I opened the door to a delivery man who called me by my first name, it took a little while for me to realise that he was the father of one of the first babies I worked with when I moved to this area. He seemed desperate to pour out his story. Here it is, I'll just change the names:
Sam and Mary were a handsome, bright young couple with a smart new house and car and lots of ambitions. Mary had given birth prematurely to twin boys, each weighing less than 3lbs. Both babies were on life support and both suffered cerebral bleeds; John died, James kept a tenuous hold on life but the parents were advised that he would have severe difficulties and that no further medical interventions should be made. For several months the young couple made the daily 130 mile round trip to the hospital to sit by the incubator and to argue with the doctors who wanted to turn off the life-support. Eventually James started to breathe by himself and they were allowed to take him home. I became involved at that point, remaining as their key worker for the next 5 years.
James underwent many life-saving procedures in the first three years of his life. Each time he came home a little more damaged, his hearing and vision were severely impaired, his cognitive ability deteriorated with each brain haemhorage and his mobility was restricted. Sam gave up promotion opportunities to spend more time helping at home and Mary became a shadow of the vibrant, pretty girl I first met. I admit that I used to hope that James would die so that they could mourn him and get on with their lives.
Sam and Mary continued their battle against the medical and then educational authorities to get what they considered to be the best provision for James and my direct involvement ended when he was given a place at the most prestigious school for children with little or no sight. Not only did they get the authorities to fund a place, they won the right for him to be taken daily by taxi rather than board. James has grown physically over the years but there has been little noticeable progress in any area of development but, believe me, no-one would deny this family anything!
This morning, Sam was eager to tell me that they have just won another battle. James reached his 18th birthday in May. Officially he should have left school at the end of term but what was he to do then? Sam told me they took on every agency again and won james the right to stay on at the specialist school until he is 22 years old. He will have to demonstrate that he is making progress in life skills which, I suspect, will be very different from the independent-living skills the other young people will be acquiring. James can't feed or dress himself so he won't be learning to shop and cook and run a home. His parents have made one concession - he will be boarding for half of the week.
Sam, who abandoned his ambitions and settled for being a delivery man, told me how, during James' first residential period last month, he and Mary had gone on holiday for the first time since their honeymoon twenty-one years ago. He was so proud and happy telling me this. He said they planned to have three more holidays during the time James is in the special unit. Then, with no place but home for James to live, he will give up his job to share the fulltime care with Mary.
This is a long story, deliberately so. Taking on a severely handicapped baby is a long story and many lives are affected. No-one would take away James' right to life now but, by intervening with superhuman efforts in those early days, Sam and Mary's right to any kind of normal life was taken away.
Just because we can doesn't mean we should.