From the view of a mother and grandmother.
William came into the world in October 1978. His first apgar reading was zero. He was resuscitated and and this gradually improved. When he was handed to me he was very very blue and wrapped up in what looked like tinfoil then he was taken away to SCBU. I had no idea what was wrong with him and neither did anybody else. To cut a long story short he was kept in hospital and then transferred to the Westminster hospital where I found out he had Tetralogy of Fallots (TOF). He came home after six weeks. Nobody really explained what was wrong with him and finally after many hospital visits where everybody kept saying “with this condition” a doctor explained to me properly and told me that without surgery my son would be dead by aged two. I was in shock to say the least but I already had two boys and just had to carry on as normal.
There was no ECHO’s then and William was in and out of hospital for a year with various caths and lots of chest infections. Finally the day came for his surgery. He was 15 months old. The operation took 8 hours and they came out half way through to tell me that William was “clinically deceptive” and would have lived for only a few more months as his pulmonary artery was so narrow. I had the usual shock of seeing my baby in PICU. He then went into complete heart failure and was on the vent for several days and another six weeks in hospital. I finally got him home and after a year of various drugs he was on the mend and I got to the stage of yearly hospital visits. He got on fine until he was five and then could not get to the top of the stairs without getting completely breathless and he started to be very poorly. It was discovered that he had a large Atrial Septal Defect (ASD) and that he would need more open heart surgery. He had this when he was seven.
He grew up was very handsome and clever and had lots of girlfriends and he became a roofer. I thought that was the end of it but no….. William met a girl and they had a beautiful little girl called Grace. They had asked for a heart scan when they were pregnant but were told that there was no need as William was a “one off”. Grace was born the first girl in our family for 22 years and we were delighted. She was checked at the hospital they were told everything was OK and they went home. Grace didn’t really thrive and looked a bit blue to me but I didn’t want to sound neurotic and just told them to take her to GP. The GP heard a murmur and she was sent to the Brompton to be checked.
I will never forget the day that William phoned me to say that Grace was a TOF (Tetralogy of Fallots) as well. I could not stop crying and was so sad that this had happened again. But we all rallied and at 18 months Grace had her surgery which went very well and she had a brilliant recovery and has not had one setback since. William and Grace’s Mummy broke up and life went on. Soon after that William went into Atrial fibrillation and had to have cardio version. He was told he could not be a roofer while he was on Warfarin and had to give up work.
And life went on.
He met another girl and they were very happy together. Then she got pregnant and they were very pleased. Again they were told that there was no need for a special scan as Grace was just “bad luck”. Liam was born in September 2009. The first thing we all wanted to know was if his heart was OK and we were told yes but that they would arrange for an echo just in case. William phoned me again crying and telling me that Liam had a Ventricular Septal Defect (VSD), Atrial Setpal Defect (ASD) and various other things. He had his open heart surgery on January 18th 2010 and is now on the mend.
And life goes on.
William has now got heart block and pulmonary regurgitation and a few other things and will probably need a new pulmonary valve soon.
But he is 31!! he is still handsome and clever and very funny.
We as a family live in this CHD world but try not to let it take over completely. We have learnt compassion.
And life goes on.
Written by Helen Preece
Helen Preece has given CHD-UK permission to use the photographs and this page.