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Master Alexander Martin Leith Schuler
Wednesday, 21st September 1994, was a very memorable day and somehow I knew that it was going to be extra special. I went to great lengths to ensure that I remembered clearly every detail. The day before Alex was born my "pains" or contractions, that had been constant for weeks, escalated until they were only a minute apart. They still weren't doing anything with regards to labour progressing but they were painful and very tiring. Emotionally I was still not coping well with the pregnancy.
The obstetrician did another ultrasound and also an amniocentesis to check on the baby's lung function. He explained that if the results came back as 3 or greater he would deliver Alex the next day. If they were less then I would have to put up with the contractions a bit longer. I was actually very relieved when they came back as "8" - meaning he was "very" ready to be born.
Alex was born by caesarean section the next day, Wednesday 21st September 1994, at 12.01pm. I only had an epidural anaesthesia because I wanted to be awake to greet him. Because my partner and I had separated my daughter, Amanda, came into the birth with me. We had emergency back up plans in case it was too much for her but although nervous she was a marvellous support and fell instantly in love with her little brother. I believe to that it helped a little with the healing of some of her emotional problems.
Amanda, Alex and I still in the theatre.
Although his apgars were good (9 & 10) he was experiencing some problems so I was only able to hold him for a few minutes. In those few minutes I fell instantly in love with my tiny little man. The ambivalence of the preceding months started to melt away. We called him Alexander, which means "defender of mankind". It seemed he needed a powerful name when he was so small and fragile. Martin was chosen because it was my fathers name.
His hands were so tiny and clenched so tight they looked almost painful. We thought that it was cute that his little thumb was tucked in and his little finger and index finger overlapped the others. We now know that this is the "classic" Trisomy 18 hand. His ears were crumpled and unusually shaped but I wasn't overly concerned as I felt that it was probably from how he was laying in the womb. He wasn't crying but lay in my arms like a fragile angel. The feeling of love in that theatre was overpowering, it drowned out all other activity. Silently I whispered a littler prayer of love and protection as he was whisked away to the high dependency nursery and I was taken to recovery.
Sadly I was never told a great deal about Alex's condition at birth. In fact communication at the time was very poor. I had the epidural left in for 24 hours after the birth for pain relief so I could not go to Alex. Someone did come down from the nursery and told me how he was and once they brought him down in the humidicrib to see me!! I was only told however that his blood sugars were a little low, he was having trouble staying warm and that he had "funny" ears, nothing to be concerned about! However I now know that he was small for his gestational age (2.06 kgs or 4 1/2 lbs), he was hypoglycemic, hypothermic and had a left-sided partial facial paralysis. He had a choanal stenosis, his ears were low set and quite deformed, his hands were clenched, the fingers overlapped and he had a rosebud mouth. But as you can see he was very cute and looked a little like an elf, though at the time I hated anyone saying that!
His greatest problem in that neonatal period was feeding. This was attributed to the paralysis, small mouth and jaw. Alex was fed via a naso-gastric tube for 7 days and I struggled to breastfeed and supplement with a bottle. Eventually using a special nipple shield I managed to get him feeding orally, unfortunately I was unable to take the nipple shield home with me!! He also became jaundiced shortly before we were discharged.
Unbeknown to me he was referred to a geneticist as they suspected a chromosomal abnormality. Blood was taken at the time and sent for testing. He also had a kidney and head, which I was told was routine when children had "funny ears" as sometimes kidney and ear problems went together. The ultrasound showed no real abnormalities. In fact the report clearly states that Alex had an intact corpus callosum and that his kidneys were within normal limits. However we now know that Alex has a dysgenesis of the corpus callosum and the start of a dual collecting system in one kidney, which is slightly enlarged.
No-one indicated that there were any real problems, in fact I was constantly reassured that everything was fine. However I guess deep down someone knew something was amiss as they put Alex on regular visits from the hospital nurse. This is normally only done for very premature babies. Alex and I both left the hospital when he was 9 days old armed only with an appointment to see the geneticist in 6 weeks for a follow up. I had no idea that anything was amiss and was so glad to be going home and looked forward to knowing my beautiful little boy. I truly believed that once we got home everything would be fine.
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