"My daughter and her misdiagnosis "

My daughter ( age 14 ) has a heart condition called Tetralogy of Fallots, a congenital heart defect that requires surgery soon after birth. She received two open heart surgeries, the final one being the repair. It is common knowledge amongst all medical professionals that fallots childrens need ongoing follow up cardiac care, as they will need further surgery later into adolescence/adulthood. They are also at risk of sudden death and arrhythmia.

We moved from the Highlands to Kent in the last 18 months, and 6 months ago my daughter for the first time started showing odd symptoms over a period of time. They were cumulative and one of the symptoms which concerned me was a discoloration around her mouth. It was grey/blue and although she didn't realise when it was happening, I felt that it was related to her heart condition. Other symptoms were swollen ankles, and fatigue, and so I decided it was time to go to the GP. We went three times in total and asked for a referral and despite knowing her heart condition, knowing that she would indeed need more surgery at some point, he said I was overreacting, and refused to refer me.

I returned home quite at a loss, My daughter's symptoms were increasing and out of desperation I took her to A& E feeling sure that a registrar or someone would see that it was a dangerous game the GP was playing by not referring her.

On arrival, I described my daughter's symptoms, they commented on her swollen ankles in what seemed to be almost a laughing 'look at the size of them' way, gave her an ECG and in total I was seen by three registrars of different specialties. She was even taken up to the childrens ward for a couple of hours to see other medical staff. They told me they could hear a murmur and her ECG wasn't totally normal but they felt it safe to assume that this was all probably typical of a child with her disease. They didn't refer her to a cardiologist, told me nothing was wrong and discharged her.

The next morning I am in panic mode, that feeling when you know your child, you know something is dreadfully wrong, and the only people you can turn to have decided to take no notice. So a tearful me telephoned the secretary of the Paediatric Cardiac Surgeon who performed life saving open heart surgery on my daughter as a baby, and told her the events, my fears, and whether I could 'self refer' and get down to Bristol to have her looked at. She agreed immediately, and two weeks later I am travelling with my sick child across England to Bristol Childrens Hospital, and into the Cardiac Unit.

My daughter was reunited with her Cardiologist, and Surgeon. They performed an echocardiogram and an MRI. We discovered that the murmur that the staff I met at QEQM decided was harmless, the swollen ankles they seemingly laughed at, the abnormal ECG that they felt was 'probably to be expected' was actually severe right ventricular dilatation, with Pulmonary Valve incompetence. So severe were these two things, that she is having open heart surgery in 3 weeks time. She is on complete rest as her body can no longer cope with any exertion. The swollen ankles is pulmonary edema (water gathering around her heart and lungs) and her right ventricle is in heart failure. The dilatation of the right ventricle is now compromising the left pumping chamber as the right fills up with regurgitated blood from the leaking pulmonary valve. The tiredness, well, that one is obvious. .

As a non medical professional, I would like to think that if a child is brought in who is symptomatic, and has a well known serious heart disease, the time for apparently guessing a diagnosis is definitely not that time.

Had I not called the Surgeon and Cardiac unit, I would be sat here now, with a very good chance that my daughter would have either have died from a heart fibrillation or sudden death.

Now can someone please tell me where the doctors I met at QEQM trained? It seemed not one of them could speak english competently and clearly. Not one of them could understand that if you hear a heart murmur and see an abnormal ECG on a patient with a congenital heart defect who is symptomatic, that this is not normal and advice from a heart specialist should be sought in the first instance.

This is scary stuff and it makes me wonder how many other children could have been misdiagnosed in similar circumstances. I really need and intend to get answers, I can assure you.

I am so angry.