The three hardest words to hear are “wait and see".

My daughter Karina was born on a Friday night in 1987 at Orange Base Hospital. I had had an ordinary pregnancy- I gained the average amount of weight, I had very little morning sickness that lasted for 2 weeks, and Karina arrived by vaginal birth after a 9 hour labour. Everything was “normal".

I had the usual ultrasound at 16 weeks to see if the baby was growing normally. I think that was all they looked for at that time. I can’t remember if they even looked for spinal cord damage then. Everything was perfect, we were having a baby girl who was growing normally. Absolutely no cause for concern.

Saturday morning my parents-in-law came to see their first born grandchild. When I went to get Karina from the nursery she was being checked by the paediatrician. I can still vividly recall when he asked what I thought of my baby. He agreed she was perfect then added “we will do tests on Monday".

I should probably add that I was 19 years old and Karina is my first child.

On the Monday Karina had an x-ray of her head and an ultra-sound of her brain (don’t forget this was 1987, CT scans were only available in capital cities). I was breast feeding Karina when two technicians did the ultrasound. They were constantly pointing at the screen and saying things like " that shouldn’t be there", ‘"that should be over there" and “that is bigger than it should be". I did ask what was happening to be told I had to wait and see the doctor.

I was on the phone to my mother-in-law when the doctor came with the results. The tests were inconclusive and they were sending Karina to Camperdown to a paediatric neurosurgeon. The nightmare started. That was the first time I was told to “wait and see”.

One thing that really stands out in my memory is the counsellor they appointed. I was very upset and stayed in my room most of the time. The counsellor took Karina to get her heel prick test done but had left the crib behind!

I was convinced she was dead and no-one told me.

We arrived in Sydney after dark on the Monday night. We were able to drive as Karina was not considered in critical condition. She was checked over by three doctors before being sent to a ward. On the Tuesday she had her first CT scan. On the Wednesday she was diagnosed with complete Agenesis of the Corpus Callosum. We were told she was the 4th person in NSW to receive this diagnosis. She was also diagnosed with hydrocephalus. We were told this was self draining and most likely just filling the gap were the corpus callosum should be. Point to remember- don’t look this up in a medical dictionary!

We were then passed to a neurologist who told us Karina could lead a normal life or be a total vegetable (their words) or anything in between, we would have to “wait and see“. There was no known cause for her condition but they thought it may have been a viral infection I had when pregnant.

After blood tests to check if she had hormonal issues and an appointment was made to see the ophthalmologist in 3 weeks she was allowed home. 

Karina started occupational therapy when she was 6 weeks old. We returned to the children’s hospital every 3 months for a CT scan, blood tests and appointments with the neurologist, endocrinologist and ophthalmologist. No change. These appointments then became every 6 months until all services became available in Orange.

Karina took more time to reach her milestones. She walked at 20 months, talked in sentences when she was 5 years old. Karina went to a special education class in a normal school until we moved to a small town when she was in year 8. Then she struggled in an environment of normal classes.

She has been to occupational therapy, physiotherapy, speech therapy, hydrotherapy and riding for the disabled. We attended early intervention and early education. Her doctors list includes Neurologists, Endocrinologist, Orthopaedic Surgeons, Ophthalmologist, Cardiologist and Haematologist.

Her list of diagnosis included Complete ACC, hydrocephalus, left hemiparesis, scoliosis, chondromalacia patellae, glaucoma, macrocephaly, general muscle weakness, smooth muscle weakness (that is things like the bowel), an eye problem that makes it hard for her to track a finger, factor V Leiden, lupus anticoagulant. Her paediatrician refused to diagnose her with autism as the ACC covered the symptoms of ASD. The problem I have with that is very few people have heard of ACC.

When Karina moved into supported accommodation at 20 years of age, mental health became involved and diagnosed her with borderline personality disorder.

Karina is now 31 years old and still lives in supported accommodation. She is high functioning, meaning she can do most things for herself but needs assistance for things like cooking. Her memory is not brilliant and she needs to learn things three times before she remembers them. Things need to be written down for her to remember them. Karina finds it hard to control her emotions and can change moods in as little as 10 seconds.

My journey has been going for 31 years and will continue. I have 2 more children who do not have ACC. I did ask for both to be checked when I was pregnant though, so I would be prepared for a trip to Sydney.

The hardest part is trying to get family to understand Karina. They think that because she is high functioning then she must be “normal". They don’t understand that the brain is such a complex organ and how much damage Karina has. The more I learn about the brain the more I realise just how Karina has been affected. There is not a part of her brain that hasn’t been affected.

All because I had a virus when pregnant.

by Tracey Jarratt