ADULTS AND PARENTS
General Information

Ulrika Jonsson Interview
Last month one of our patients, Jade, and her Mum emailed Ulrika some questions for the website. Jade was in hospital and was recovering after surgery. here is Ulrika's reply to Jade's email:

Dear Jade
Thank you so much for your lovely letter. I hope you are recovering well - you'll probably be home sooner than you think. You young ones seem to recover much better than us old ones...!

Here are some answers to your questions:

I was truly devastated when I found out the baby I was carrying (Bo) had a heart defect. It was a complete shock and not something that I had been able to anticipate. I was half-way through my pregnancy when they detected the defect at a routine scan.

I was grateful I found out then because some mums don't find out there is anything wrong until their baby has come home and then stops breathing all of a sudden. I think that would be a dreadful shock. So, although the rest of my pregnancy was quite miserable and worrying - at least I had been warned.

I did at first wonder if there was anything that I had done which might have contributed to my daughter's heart defect. But despite me asking and asking and driving the doctors a bit mad, they insisted that these things 'just happen'. So in the end I didn't blame myself. And in some way that's a comfort, because life should not be full of regrets.

I am delighted Bo came into my life, despite the worrying circumstances. I haven't wrapped her in cotton wool, because the hospital told me not to, but I have cared for her very intensely and given her huge amounts of attention. This means, she's quite demanding now aged 4 1/2, but she's also very strong, feisty and very, very funny.

Bo has to take medicine four times a day. She has one medicine called 'Captopril', three times a day, which slows her heart down and stops it working so hard. She also takes one dose of aspirin to help thin her blood so it doesn't clog up. She will be on these medicines for life. But she's really cool about taking them and often likes to take them herself (obviously while I'm watching!!). She's not fazed by medicines and doesn't mind it when she has to have Calpol or Nurofen...

Bo has hopefully had her last operation. She had her first when she was 6 days old - which was a closed heart operation (meaning they kept her heart beating while they operated). The second operation she had was the day before 9/11 happened - she was exactly 10 months old. This was an open heart operation (meaning they stopped her heart beating and put her on a by-pass machine). Her final op was March last year - Bo was 3 years and four months old. She did really well and the operation was a success. She did, however, get an infection in her scar which meant another few days in hospital. But apart from that she showed amazing courage and strength - even when they were coming to take her bloods in the middle of the night!

As a mum it is a terribly worrying time when your child is in hospital. But on the other hand, you know they are in the best place. I do worry a lot whenever Bo gets a fever or says she feels unwell. But since her last op she is a completely changed child. Her oxygen saturation has gone up to 98% and she has more energy the lot of us put together. She is strong, funny, energetic and incredibly demanding. But she's special and we wouldn't have her any other way.

I hope you and your mum get some peace of mind from my answers. The amazing thing is that so many children have heart defects that you know you are not alone. I found my times on the ward at Guy's Hospital in London, very comforting and reassuring. Parents from all walks of life were in the same boat as me - and we pulled together.

All my love

Ulrika (Jonsson)

Thank you so much for your reply Ulrika, we really appreciate your time and the reply you have given.

 

Updated Winter 08/09