"My 6-year-old with restrictive cardiomyopathy"
Maria Wright shares the story of her daughter Tamiya's rare heart condition.
On 6 November 2009 I had to take my daughter Tamiya to the children's hospital in Bristol, UK. Doctors had diagnosed her with asthma and we needed to go to the hospital to get a stronger inhaler for her.
When the doctors at the hospital looked at her they did an X-ray which showed her heart looking very large, so they did and echo and found that she had a rare heart condition called restrictive cardiomyopathy. She had an operation the next day on the 7th to drain fluid that was buliding up around her heart.
A few weeks later she had another operation to drain the fluid again and they made a hole in the sack that surrounds the heart so fluid didn't keep buiding up.
Then a few more weeks later she had a cardiac catheter done to measure the pressure of her lungs to see if she would be suitable for a heart transplant – that is the only thing that is available for people with this condition, there is no cure so transplant is only option.
Tamiya went into cardiac arrest during the operation – her heart stopped for 25 minutes and the doctor had no choice but to put a pacemaker in. Her pacemaker constantly works and she is completely reliant on it.
We then went up to Great Ormond Street hospital for another cardiac catheter. Thankfully this one went well with no complications, but sadly her pressures were too high and that meant the transplant wouldn't be suitable for her as she was more likely to reject it. The doctors felt it would be more fair to Tamiya to let her just enjoy her life however long she might have.
Doctors and statistics say that Tamiya isn't likely to get past the age of 5... and she is nearly 4 now. Her condition is not only rare, but Tamiya is very young to be diagnosed with this as most people aren't diagnosed until about 6 years. So the doctors are writing up her story and publishing in a medical journel to help any future cases.
If you look at her you wouldn't even know anything is wrong with her... she is a very strong little girl and as her mother I'm very proud of her.