Lindsay

March 1994 was the worst month of my husband's and my life. We had just been told that there was something wrong with our unborn child. Our first child, a boy, had been born healthy 18 months earlier. We were sent from our local doctor to the John Hunter Hospital an hour away.

The second scan also found shortening of the long bones. The bone size was in keeping with a 16 week fetus not an 18 weeker, body and head size were normal. We went through the range of emotions, was it something we had done, why did this happen to us, etc, etc.

We had four or five scans over the months and all they could tell us was the baby had some kind of achondroplasia, good or bad we didn't know. The last scan at 32 weeks gestation, the size of the long bones were that of a 24 week fetus. Body and head size were that in keeping with a 32 weeker. We also went to see a geneticist Dr Matt Edwards he took us through a whole range of scenarios and what we might expect.

I was admitted to the John Hunter Hospital on the morning of 10/08/94 to be induced. Lindsay was born at 5.16pm after an uneventful labour, with apgars of 9 and 9 at 1 and 5 minutes. The geneticist Dr Edwards was there and after examining her he found her to have EvC. After an initial period she developed some respiratory distress. An echo confirmed pulmonary hypertension, she was treated with 100% head box oxygen. A chest X-ray showed poorly perfused lung fields. A cardiac echo showed that she had a very large Atrial Septal Defect. There was also a small cleft in the Mitral Valve. The first night and day were really tough as they couldn't tell us if she would live or die. Things started to improve and by the fifth day she went from head box oxygen to nasal prong oxygen, at least we were finally able to cuddle and feed her.

Lindsay was a fussy feeder not taking to the breast to well or bottle as her tongue was not as big or long as other babies. and she could not latch on to my breast very well, same with the bottle teats, someone suggested a lamb's bottle teat which is long, we got one from our local vet, it seemed to work very well. She was also started on small amounts of solid foods at eleven and a half weeks to increase her calorie intake.

Lindsay was three and a half weeks old when we were allowed to take her home on !00% nasal prong oxygen, weighing less than when she was born (birth weight 3140gms, discharge weight was 3080gms). Her length at birth was 50cms. Lindsay was on a small dose of lasix and spironolactone (diuretics) to keep the fluid off her heart, medicines stopped 23/06/95. Lindsay was on oxygen for four and a half months, we had to try not to let her cry too much as this used up precious calories and made her go blue from lack of oxygen. After a sleep study it was decided that it was of no benefit for her to stay on oxygen. It was wonderful to finally have a "normal" baby (no oxygen to carry everywhere we went).

      

Lindsay developed normally, rolling, sitting, talking and walking when she should have, teeth came through as they should only they were pointy or sharp. Apart from seeing a few different specialists through the year Lindsay had a pretty good first year.

When she was thirteen months old she had her heart surgery. We had to travel to Sydney three hours away for this, she came through this operation very well. Dr Chard was surprised that the hole in her heart was so big, it was around 3 cms in circumference. On the fifth morning we were allowed to go home. Lindsay needs antibiotic cover whenever she has any procedure done, because of the mitral valve leak. Her general wellbeing improved after her heart surgery, eating better and more active.

Six months later we were back at the John Hunter Hospital for another operation to remove her extra toes. Then six months after that we went to Sydney again for an operation to remove her extra fingers as they were nonfunctioning and got caught on things. Lindsay had an uneventful couple of years, at fifteen months she was 68.5 cms tall and weighed 8 kgs, and she could talk the leg off an iron pot (and still does). She loved going to kindergarten and then preschool. In preschool some of the older children teased her about her teeth, so we had the four front top teeth crowned. When the crowned teeth fell out two other teeth came through but they were so big and misshapen that the dentist had to pull them out and make a plate with four front teeth on it.

In October 04 Lindsay had her knees and ankles on the growth plates on the inside stapled to stop the bowing of her legs. One of her knees was giving way when she would run or play and she would fall over. She came through this operation fine but it was four weeks before she was walking properly again. She had physio and Bowen therapy for pain and to get her moving again.

Lindsay is a great swimmer, and loves dancing. She plays netball, goes to Guides and is always a big help to me around the house, the only thing she can't really do is hang the washing on the line, even thought she tries. Her height is now 123cms and she weights 26kgs. Lindsay has always been treated like anyone else in our family, we have never made her height an excuse for not trying something.