Tom was born on 29.05.85 his expected date of delivery was 17.06.85. After an uneventful pregnancy Tom found to be in the breech position. He was delivered via the pelvis, but the birth
was complicated by the speed and the position of the cord around his neck.
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Tom Pictured in 1996
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He was born with Apgar 2.10 for one minute, with a pneumothorax which spontaneously resolved in Special Care. He was here for a week when stiffness of the hips was noticed.
At the six week check with his paediatrician his hips were again mentioned. He also had a noticeable squint. The paediatrician decided to see him at three month intervals but we were reassured that it was just a slow start.
At six months Tom was still floppy with little head control. Although breast feeding appeared frequent but successful, with the addition of solids he had real problems. Swallowing was difficult and always followed by projectile vomiting. As his food was sloppy so were his stools and the skin on the bottom was always sore.
At twelve months it was suggested that Tom had delayed development due to his poor start (we understood this to mean his birth) but in hindsight no one ever explained why. We decided to have another child and were not told of any genetic implications. To this day we feel justifiably perturbed by this lack of advice, to a young couple with a baby with obvious problems.
At fifteen months, our frustration with our paediatrician increasing, we asked for a second opinion. Tom was still floppy, sick and growing at an incredibly slow rate. we had started weekly physiotherapy sessions and were trying to teach him to sit. But Tom’s muscle strength was non existent. At this time a muscle biopsy was done which showed some strange muscle fibres and genetic implications were first mentioned with our second baby due in two months.
At seventeen months Tom had a sister Victoria, sadly at six weeks it was obvious she had a similar problem (our paediatrician seemed unnaturally delighted, which led us to believe that there had been some anxiety about Tom’s birth from those involved). However we now had two very sick children and it was time to move on.
Two years. Tom can now roll (in a fashion). He can be propped in the sitting position but not left alone. His weight has begun to increase. On the down side his feeding is still extremely difficult. He is still vomiting and finds it hard to swallow. He is wearing glasses and his hand/eye co-ordination is poor. He can hold a biscuit. He has had extremely poor health this year with continual chest and ear infections. He has been continually on antibiotics. His height and weight are mirroring the normal growth curve but consistently below the third centile.
At two years plus, we hear about the Institutes for Human Potential in Philadelphia, and The Doman Delcato programme. There was a clinic close to us in England and we decided to give it a go. (We commence potty training with the discipline of an army).
At two and a half Tom is commando crawling and sitting independently. His hand/eye co-ordination is improving rapidly and he is now able to play. He is exhausted by his daily exercise programme and is therefore sleeping better at night. He is still beset with infections but we are coping. During this year Tom has an operation for bilateral hernias and undescended testicles. All is successful.
At three years Tom has learned to hold the quad position. His sickness is reducing and at last he is beginning to feed himself using his fingers. He is becoming happier and more sociable with the addition of these new skills. He has surgery to correct his squint. This appears successful. Speech is currently one word commands.
At four years Tom is now crawling independently (he is finally mobile!). He is now dry by day and night and even signs to go to the toilet. He has dental surgery to remove baby teeth rotted by his continual sickness. He starts normal school and his speech is still difficult to understand.
At five, Tom is at school and still carrying out his exercise programme, which makes him very tired (hallelujah). He can count to ten, knows his alphabet and colours. He can pull himself to standing on a solid object. His diet and food management are improving, he uses a fork and spoon but is still messy. He is still plagued by colds and infections. His speech is now two or three word phrases.
At six years he continues to grow stronger and healthier. We now can holiday abroad with confidence. His speech is much clearer and the content is maturing. Tom likes singing.
At seven years he is beginning to read simple stories. He can remember and recount simple ideas and is a very happy little boy. His sickness has almost stopped and his personality is flourishing. He has an operation to straighten his ankles (a bilateral Grice). He is in plaster for six weeks and then starts his exercises again. Adenoids removed, haemorrhages afterwards and has an uncomfortable few days recovering.
At seven years we finally have a diagnoses. It is such a relief to try and understand what has gone wrong.
At eight years Tom starts to use a rollator.
At nine Tom is independent on his rollator for short distances. We use a wheelchair for longer trips. We have adapted normal chairs for use at the dining table, raising them up and providing foot rests. The children use normal thick handed cutlery and normal unbreakable drinking glasses but only half filled. We encourage normal habits at all times.
At ten years Tom’s reading an speech are improving daily. Scoliosis and a pigeon chest are developing although we are encouraging good posture at all times.
At eleven years Tom has completed his primary school education and we have started him at a special school to which he travels daily. (This took us a year of fighting for but it was well worth the effort). Tom’s only medication is a preventative inhaler to combat mild asthma. Tom is an extremely happy boy with an out going personality. He enjoys all company but is becoming more discerning with age. He has his frustrations but generally deals well with them, and he is becoming less demanding as his capabilities increase. Physically he is still growing stronger and his speech and concentration span are increasing daily. He is enjoying much improved health and so the quality of his and our lives are improving.
eff: 1997