Rachel was born in Autumn 1998 in Armidale NSW, she was a healthy baby. She was very energetic and studied ballet until she was 8. When she was 7, she collapsed at school during cross country practice and I took her to the local GP who found that her blood pressure was low.
The doctor said she was fine to go home, since her collapse would have been due to running in the hot weather combined with her low BP. Rachel has been getting progressively more tired since then, and she was experiencing chest pains but thought these were normal so she didn't tell us about them.
I have taken her to doctors every year to find out why she is so tired and why she has been experiencing bloating in her stomach. They have tested her for thyroid problems, celiac, leukemia and other diseases since she was 7.
We moved to Perth in 2007 and she started having stomach problems which were at first attributed to stress from moving. Late last year I took her to the ER at Armadale Hospital and they found that she had pneumonia, so she was kept in hospital overnight and we left with antibiotics the next day. In February this year, she had a fever of 40 degrees Celsius for 2 days and I took her to the GP where she was given antibiotics and sent home with instructions to continue taking Panadol.
Two days later she still had the fever which would go down after taking Panadol, but would increase again when the Panadol wore off each time. So I took her to the ER at Swan Districts hospital where she was admitted and they ran tests including an x-ray. They found that she had pneumonia caused by a bacteria that doesn't normally infect people with a healthy immune system.
Rachel was in hospital at Swan Districts for a week and given fluids through a drip. Then she was released with more antibiotics. In early March, we had a follow up meeting with the hospital which including them taking another x-ray of her chest. On this x-ray they noticed that her heart was enlarged so we were referred to a cardiologist at PMH on the 30th of April (the day before Rachel's 16th birthday).
At PMH they did an echocardiogram and found that Rachel had a type of hypertrophic cardiomyopathy where the muscle of the heart is thickened. They gave her a heart monitor to wear overnight which found a few "minor" irregular heart beats. The next week they did an MRI and CT scan.
During these tests they discovered that she has restrictive cardiomyopathy and her heart doesn't relax properly, so the ventricles can't fill up fully. So her body isn't getting enough blood circulating around. This also means that blood is not leaving the left atrium, so it is very large. The cardiologist said that blood clots could form in there and travel to other places in her body.
He also said she will need a heart transplant "From 2 weeks to 2 years" which has left us all terrified (especially Rachel). Then, on the 4th of June at PMH Rachel had a biopsy and catheterisation done to test the pressures in her lungs and to find a possible cause.
While taking a piece of her heart, a hole was ripped in her heart which caused blood to pool around the heart. She was rushed to the ICU where the pooling blood squashed her heart and caused it to stop. She was resuscitated and the blood was drained.
Luckily the hole closed by itself or she would have needed to have it surgically closed. She spent 4 days in the CCU at Royal Perth Hospital (RPH) after that.
Since Rachel is now 16, she has been transitioned to the RPH cardiac failure team where she has blood testing and ECG's regularly. She also attends their cardiac gym every Friday to improve her body mass and stamina so she can have an easier recovery after a transplant.