Our son Christopher turns 30 this week. It is hard to believe that he could be as old as that – many of you reading this may be the same age, or even younger! Even though it was a long time ago, it is very hard to forget the details and feelings of such a dramatic event.
It was such a shock when he was born. I was still teaching, and had 5 more weeks to go at school. I thought I was only 29 weeks, and was totally unprepared for my first birth. I wondered how my little Preps would manage without me, and I wondered how we would manage financially. It was funny, but I didn’t worry how the baby would go – my twin cousins 3 days old had been born prematurely 10 years earlier, and at 850g and 964g had come through with flying colours. Little did I know!
Christopher arrived on the 23rd October 1979, after almost 2 days in the labour ward of the Royal Women’s Hospital. I had been put on a ventalin drip to try to stop the labour, but unfortunately it raised my pulse rate too much, and when the amount of ventalin was
lowered the contractions began again.
The birth itself wasn’t terribly complicated, although forceps were necessary because of Christopher’s prematurity. However, we were soon to discover that although Christopher was a good weight – 1600g – he did have his problems. Due to an incomplete course of steroids to mature his lungs, he had chronic lung disease and needed to be on a respirator. There were none available at the Women’s, so he was transferred to the Royal Children’s Hospital NICU. That meant that I was only able to see Christopher once a day, taking my small container s of milk through the hospitals while dressed in my nightdress and dressing gown! Our parents were allowed to see him, after warning them what it would be like – as we all know now, it is horrible when you first walk in to see your own baby wired up to all sorts of machines, unable to make any sound himself, but with those awful beeps from the machines.
The Neonatal Emergency Transport Service (NETS) people were lovely, and left me with a photo of Christopher, which I proudly showed my visitors. It was difficult only having a photo when the other mothers in the ward had their babies, and there were many tears in that first week (and many shed since!) Coming home for the first time from hospital without Christopher was very traumatic for me – I sat in the car in our driveway and howled. Peter had been warned by one of the doctors that this might happen, so he was quite prepared. That particular doctor had had two prems himself, one born at the same time as Christopher, so he was very supportive.
Christopher remained on the ventilator for 11 days, during which both lungs collapsed, requiring drain-age tubes. All this time the doctors were quite optimistic about him, which kept our spirits up. I was glad that the staff almost forced us to touch and speak to Christopher, we found this difficult at first, and it took a while to really feel that he was our baby.
I think that expressing my milk for Christopher was very rewarding at that stage, especially knowing that because I had more than enough milk for him, some other babies in the NICU were also receiving my milk. Yes – this was in the days before AIDS was a problem in Australia, and any excess milk was put into a pool’! It is interesting that this is being considered again. It used to take me just under an hour to express, because I could only hand express, and did not ever experience the let down’ (I finally experienced that years later with my next child, Jenny).
As soon as Christopher’s chest drains came out and he was able to breathe on his own, he was promoted’ to 10 West, which in those days was the Neo Natal Special Care Unit at RCH. At about two weeks of age he was transferred back to the Women’s. Apart from continuing episodes of apnoea, he seemed to be progressing quite well, and at two and a half weeks was back to his original birth-weight.
However, when he was three weeks old, the doctors informed us that that Christopher had a condition called Hydrochephalus, which is an excessive accumulation of fluid in the brain (sometimes called water on the brain’). This had been caused by a cerebral haemorrhage, which resulted in a blockage in the ventricles of the brain. We were told that it meant an operation as soon as possible, to insert a shunt to drain the excess fluid. He had to have the operation to survive, and he most probably had brain damage.
Those words, “brain damage” had a devastating effect on us – we had visions of our perfect baby boy being physically and intellectually damaged, not being able to lead a normal life. To top this off, we were rung in the early hours of the next morning to be told that Christopher had stopped breathing be-cause of the enormous pressure in his brain, and had to be transferred back to the RCH for ventilator treatment. I was an absolute mess that day, and because Peter couldn’t take the day off work he took me to my parents’ house. I don’t know who was more upset that day – my parents or myself. They found it very difficult to deal with the diagnosis, but were very comforting during that extremely long day.
A day later Christopher had stabilised enough to have the operation, and he recovered quite well. He was soon transferred back to the Women’s (the NETS are wonderful!), and finally came out of the isolette after six weeks of oxygen. I began to spend all day with him, bathing him and generally bonding with him. I was conscious of the brain damage, and talked and sang to him when he was awake, which was happening more and more towards the end of his hospital stay. The shunt was working well, and Christopher gradually moved through the Special Care Nursery towards the almost ready for home cots. He wasn’t a great feeder, though, having been tube fed for so long, but not long before Christmas he finally seemed to get the hang of it.
After I had spent 5 days in hospital over Christmas with Christopher to establish feeding, we were able to bring him home, at 9.5 weeks and around 2500g. The breastfeeding lasted one week! We ended up in the Mother and Baby Home in Kew, and after ten days of struggling with his feeding we came home with Christopher on the bottle. I felt guilty for a while, but was reminded that he had had three months of my milk which gave him an excellent start.
Christopher was a healthy baby, but very demanding and colicky.
He slept very little during the day, but thankfully slept well at night. He was an extremely frustrated baby, very alert but physically slow. I spent my days trying to entertain him, as he was not happy to lie in one position for long. We went out a lot to give him a variety of scenery and stimuli, and we made up a stand to hang rattles and other toys and objects, to encourage his hand/eye co-ordination as well as to keep him occupied. Nowadays there are all sorts of play gyms and so on, which are great for babies. I talked to Christopher a lot, and read him countless stories. I sometimes think I overdid it, as he never stops talking!
When Christopher was seven months old his paediatrician told us that it looked as though he had cerebral palsy, and that if he did walk he would be very late walking, and have a lot of difficulty. He told us to wait and see what he was like at twelve months! My Maternal Health Nurse said that we were definitely not to wait, and contacted the local Early Childhood Development Program, where the Physio and Occupational Therapist helped him to roll, sit, crawl and then finally walk at 19 months. He always took longer than other children with his gross motor skills. Climbing stairs, pushing himself along on his first little car, and pedalling tricycles were examples of skills that did not come easily, but he eventually mastered them! We bought him a trampoline, enrolled him in a basic gymnastics program with a very patient and understanding coach (Gymbaroo was only just starting up, and was in Kew, which was a long way to go), and generally encouraged him physically. I spent weeks and weeks running up and down our court beside him as he learnt to ride his bike at the age of seven.
Christopher was not allowed to play football, but is a mad keen Brisbane Lions supporter. He loved playing cricket, however, and played for many years with the local club and secondary school. He even mastered the art of slalom water skiing when he was about 15!
Intellectually, Christopher had no problems. He spoke well before he walked (and as I have already said has never stopped talking!) and was very proficient in reading and writing. He went to Melbourne High School in year 9 for six months, but hated the travelling and missed his friends here, so came back to the local high school. Melbourne High School is an elite high school which is entrance exam only, so he did very well to qualify. He had no problems with Maths until he was in year 11 at school, but still managed to pass year 12 basic Maths. We had been told that children with Hydrocephalus usually have difficulty with Maths be-cause of the area of the brain that is damaged.
Christopher has basically been very healthy, although he did need a new shunt when he was 13 (as well as having the original shunt lengthened when he was 18 months old). He has developed epilepsy, though. He was 15 when he had his first seizure, although he had also had febrile convulsions as a toddler. I thought he had had a stroke, as he was conscious, but was not quite with it and was speaking gobbley gook‖. He had many seizures at school, (including a school cricket match), part time work and when visiting friends, which was very embarrassing for a teenage boy. He couldn’t learn to drive when his other friends were getting their licenses, and that was difficult.
After many different medications and combinations of medications, scans, MRI’s and blood tests, his epilepsy was finally under control, and after a year free of seizures Christopher was able to get his Learners Permit and begin to drive. He has not had any seizures since. It was interesting that his neurologist pointed out the indications of Cerebral Palsy on his MRI. We had wondered whether he really did have CP, or was just physically slow.
Christopher is now a Computer Systems Analyst and has been working for a firm in Ottawa, Canada, where he has been living with his Canadian girlfriend for 2 years. I have just found out that they will be returning for good in March next year, so I am thrilled.
As for other pregnancies – I tend to go into labour spontaneously around 29 to 30 weeks. I was put on ventalin again during my next two pregnancies, and combined with bed rest I delivered Jenny at 37 weeks, and twins Kate and Laura at 34 weeks. They had no problems apart from jaundice and feeding, and were allowed home in 10 days and 2 weeks respectively! Jenny unfortunately developed Juvenile Chronic Arthritis when she was 9, and this has developed into a Rheumatoid Arthritis, but she is generally able to manage it. That is another story!