Spina bifida - Personal story | Better Health Channel
Tamlyn's personal story living with spina bifida

Tamlyn has spina bifida. She tells us about her own life and her life with her daughter who was diagnosed with a chromosomal abnormality.

Can you tell us what it was like growing up with spina bifida?
Growing up with spina bifida was quite hard when I was younger. Primary school wasn’t exactly a barrel of laughs. I remember being teased a lot and missing quite a lot of school due to operations and doctors appointments.

As I got older, grade six and high school were fantastic. I started to make friends, my health improved and I found sport.

Does having spina bifida affect your everyday life?
It does affect my everyday life, but not in a negative way. It just means that I have to find different ways to do things. I can do everything I want to do, it’s just slower.

How have you managed your condition?
I have managed my condition by having a sense of humour, knowing that there is always someone worse off than me.

What has helped you to cope?
What has helped me is having a very supportive family and a fantastic group of friends to support and encourage me. Finding the Spina Bifida Foundation has also helped. It’s great to meet and to talk to people who are going through similar things. Having the opportunity to do volunteer work has been a great coping strategy; knowing that I can help somebody else is a great feeling.

Has it limited what you can do?
It hasn’t limited me in what I can do. In fact, if I didn’t have spina bifida I wouldn’t have met the people I have met. I also wouldn’t have been able to represent my country in sports if I didn’t have the condition. I was involved in competitive sport for 10 years, which also helped me cope. I made so many friends and it gave me a great sense of achievement.

What would you say to someone who has a child with spina bifida, or to a young person growing up with this condition?
One thing I would say to people growing up with this condition is never give up. Try to see the positive side to it, even though it may be hard sometimes. There is always someone out there that is doing it tougher than you.

Were you able to have children?
Yes, I was able to have children, despite the doctors telling my parents that this probably wouldn't be an option.

What were your thoughts when you found out you were pregnant?
I just assumed my child would be born with spina bifida. What other option was there? I thought that if I prepared myself for that, I could cope. Eventually though, I learned the chances of having a baby with the same disability as mine were quite slim.

Zoey was born by emergency caesarian. I remember the day as if it where yesterday. I had been in hospital for about two to three weeks with high blood pressure. The obstetrician just wanted me to rest. He was quite confident (and so was I) that I would have a natural delivery. I had been having regular ultrasounds and the baby appeared to be fine. I remember constantly telling myself that everything was going to be okay. However, that wasn’t going to be the case.

My mum was in the hospital visiting me and we were playing cards to pass the time. My partner was at work. The nurses would come in every so often to check on me. I remember complaining to mum that I couldn’t get comfortable; Zoey was constantly moving and kicking me.

It was just after 3pm when I started to feel strange (that’s the only way I can describe it). I remember feeling cold and very tired. Zoey wasn’t moving. My mum called the nurses in immediately. All I could say was, ‘Should I ring my partner?’ They examined me further then called in the obstetrician.

He just looked straight at me and smiled. He said, ‘Call Stuart, you’re going to have a baby in about an hour’. It was a mix of emotions – panic, fear, anger and happiness.

When did you realise that there may be health problems with your daughter?
At 4:36pm Zoey arrived in the world. The medical staff let me hold her. I was so happy until Stuart said, ‘Why has she got extra fingers?’ My heart sank.

She was taken away and we were told not to worry, that it’s quite common. What wasn’t common was the news that we were about to receive. Zoey didn’t have spina bifida, she has a chromosomal abnormality called 8Q deletion, which means deletion of part or all of the long arm of the chromosome 8.

At the time none of this sunk in. I wasn’t listening to them. She was supposed to have spina bifida, I told them, not this.

How is your daughter’s health now?
My beautiful little girl is now 13 years old. A teenager who is not so little, although she is still very short and small for her age. Zoey is able to say the very occasional words like ‘mum’, ‘up’ or ‘good’. She has grown out of having seizures, which is fantastic, and she is very cheeky and generally very happy.

Her health overall has improved over time, although in the last couple of years she has been diagnosed with a few more health issues.

How common is your daughter’s condition?
It is extremely rare. So every day is a guessing game and we wait to see what will happen. I am very happy to say that it has been a year since Zoey has been admitted to the hospital and we generally only have to go in for an appointment every six months. This is a huge change and relief to both of us.

Zoey will have ongoing problems and unfortunately a majority of them are rare. We never know if any one problem is related to her chromosome condition or if it’s just her.

Every day is a challenge but Zoey and I don’t know any different and we wouldn’t have it any other way.

Find out more about Spina bifida - read other fact sheets that contain this personal story.

This page has been produced in consultation with:

Spina Bifida Foundation of Victoria