The 6th October 2008 was a very happy day for my family as my second daughter Robyn was born, a gorgeous little sister for Morghan. On the 24th October 2008 though life was turned on its head when she went into heart failure.
She was diagnosed on the 25th October 2008 with Severe Aortic Stenosis (http://congenital-heart-defects.co.uk/aorticstenosis.aspx) which is a CHD (Congenital Heart Defect). That weekend we nearly lost her as her body started to shut down. On the 26th she had a balloon valvotomy by the amazing Dr Rigby at the Royal Brompton which saved her life. Unfortunately a couple of months later it was found that her valve was narrowing again so in February 2009 she had another balloon valvotomy. This wasn’t successful however, so on 4th June 2009 she had Open Heart Surgery where Mr Shore carried out a surgical stretch of her aortic valve. This was a complete success, within 2 days she was out of PICU (Paediatric Intensive Care Unit) and onto Rose Ward, and 2 days after that she was home again, it was incredible!
Since then Robyn has done amazingly well. She will need a valve replacement at some point in the future via a Ross Procedure, following her last cardiac assessment they hope that this will be 2-5 years away.
To look at Robyn you would not know there was a thing wrong with her. She has bundles of energy and spirit, we couldn’t hold her back and wrap her in cotton wool if we tried. Things like a simple cold or cough can completely knock her sideways though, normally developing into a chest infection really quickly. She can get breathless quite easily, as her heart is still working harder than it should. We live with the knowledge that at any time her heart may start to really struggle again and we could be back into hospital with her, and she’ll be facing more surgery. Her heart already has areas of scarring from working so hard before her surgery, these areas will never heal.
CHDs are the No.1 cause of death from a birth defect, killing twice as many children as cancer every year. They are not always found during pregnancy or at birth, many are not found till childhood, adolescence, adulthood, or after death when it is too late. CHDs can not be cured, the heart must be monitored throughout life. Most will need multiple open heart surgeries, some may even need a heart transplant. Babies born with CHDs may need their first open heart surgery at just a few hours or days old.
The British Heart Foundation funds research into many areas of treatment, the most prolific at present being the current Mending Broken Hearts campaign (http://www.bhf.org.uk/research/mending-broken-hearts.aspx). This could mean great things for any sufferer of a CHD, or aquired heart disease.
Since Robyn was diagnosed I have made contact with many parents of children with many different CHDs. They are all amazing children who have fought so hard to still be here, and some sadly have lost their fight. It’s a helpless place to be being the parent of a child with something that will affect them in some way all their life. Raising money for the British Heart Foundation is my way of giving something back for the research over the years that has led to my gorgeous little girl still being here with me.