by Danielle, 14

I was born with my bladder on the outside of my stomach (Bladder exstrophy) in Pittsburgh, USA. I had to be rushed to the Children’s Hospital to have surgery to close it. I spent a month in hospital and had to be kept in an incubator with metal rods in the sides of my knees to support my pelvis. My parents couldn't hold me until I was able to go home after a month.

My mom has taken care of my brother and me since then because of my father not wanting to be a good dad to us. He never helped my mother so we moved to Philadelphia with my mom’s family and my parents got a divorce. Since I was a baby I have had many operations – so many that I am not even sure of the exact number. It might be between 15 and 20.

My first major operation was when I was seven-years-old. I spent a month in the hospital with metal rods in my legs again the entire time. Sometimes there was pain and other times I was just fine. I watched movies and the nurse would wheel my bed down to the games room so I could play computer games. Of course I couldn't move so I had to stick my hand out to the mouse and look at it sideways.

Back to school

At home I got a welcome back party and spent weeks in bed and more weeks in a wheelchair. So basically I missed half of first grade. Going to school was hard because I had to walk around in a walker. My hair had to be cut short like a boy because it got so tangled from lying in bed for a month. In first grade it wasn’t as bad because kids didn’t know what was wrong and helped my out a bit.

At elementary school I got picked on sometimes. Kids would call me diaper [nappy] girl. Sometimes I would be upset but most of the time I would ignore it, thinking it doesn’t matter what they say because they have no idea.

More operations

I had my next major operation at 12. I wasn’t exactly scared because the doctors never told me the full story of what would happen to me during my ten-day stay in hospital.

It was hard. It was very painful too. The first night was so bad I just couldn't wait for it to end. At six the next morning they took me to surgery, which lasted 16 hours. I woke up in the intensive care unit feeling horrible. At first I didn’t know what was going on. I couldn’t even see clearly and I didn’t understand why there was so much pain. The pain lasted a long time. Every part of my body felt like a car was running over me.

As the week went on I switched to my own room. I remember at first that the pain was still there and having to push a button to get morphine for it. The first few nights I threw up all the time and I couldn’t sleep. When they had to wash me it felt so terrible and when they moved me I would scream. My stomach was so bad I couldn't even look at it.

After a while I could start getting up but I had to carry four bags for the four tubes coming out of my stomach. I would sit down sometimes and automatically feel nauseous and dizzy. At night I couldn't sleep because the monitor would go off all the time. This is because I still wasn’t breathing fully, which aggravated my mom and only made me more mad. Sometimes they would have to prick my fingers or give me a new IV.

Going home

When I went home I still had the tubes and I had to carry them around with me when I walked. It was really painful sometimes. My mom would always look at me with sadness, along with my family.

I started to be able to walk more and my school had a tutor to come teach me what I was missing at school. I went back for an appointment with the doctor who told me he had to pull three of the tubes out. Of course I freaked out and shouted for him not to, remembering the time they had done it before. It was painful and I screamed the entire time. At first I was too shocked to move at all and the nurse gave me a shot to ease the pain in my shoulder, which only gave me more pain.

After being out of school for two months I had to wear one big tube, which connected to a leg bag. This meant I had to wear baggy pants the whole time. When it was taken out I felt better.

I was now able to start cathing with a tube down my belly button and a bag to hook up a catheter at night.

Since then I have had minor surgeries for reconstruction and one for my hip scars to make it look more normal. I guess it helped but I still never wear anything that shows my stomach and hips.

Feeling lucky

People always tell me they think I am brave and that what I went through must have been hard. Funny thing is I never felt that different growing up as a child. I played with everyone else and didn’t feel that different. Yes, it had a big impact on my childhood because it was painful. Yet it gave me strength and courage to do other things I probably would have been too scared to even try.

It may be hard but it doesn’t affect me as much because people can’t see it – they think I am completely normal like everyone else. So basically, I don’t regret having bladder exstrophy. If I didn’t I wouldn’t be as mature as I am or strong enough to deal with hard stuff now and then.

This story may have been edited by Children First for Health for editorial and confidentiality reasons only.

For more help and information

Bladder Exstrophy Family Association

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