Our Family

Our Family

Sunday, 9 February 2014

CHD Awareness Week

CHD or Congenital Heart Defect Awareness is a big issue to me and Greg.  Before we knew Robyn had CHARGE Syndrome we knew about her CHD. So in honour of awareness week I want to talk a bit about her specific problems.
For anyone thinking Why? it's fixed now isn't it? I would like to point out there is NO cure for CHD. Robyn had open heart surgery at just 8 days old. One problem was repaired but has high risk of reoccurring , the other was only partially repaired and will probably require further surgery at some point. A surgery that runs a 1 in 25 chance of killing your child is not a cure. Its a horrific gamble that no one should have to take.
Robyn's first condition is a coaractation of the aorta. The aorta is part of the heart mostly responsible for directing blood to your legs and lower body. A coaractation is simply a narrowing of this part of the heart. Robyn's was so severe her surgeon referred to it as 'almost an interruption' This narrowing prevents enough blood getting to Robyn's legs. It is the main reason her feet are always so cold now. It can also cause problems in the left side of the heart as that side needs to compensate by working harder to force the blood through the narrowed area.
This is where Robyn's AVSD or atrioventricular septal defect occurs. Essentially this is a hole in the heart or in Robyn's case lots of little holes through the chambers of her heart. This means that the blood in both sides of her heart was mixing in between beats. The old oxygen light blood coming into the heart mixed with the oxygen rich blood going out and then was pumped round the body again with lower oxygen content than it should have. This was partially repaired and as a result of this part of the operation one of the valves in her heart hasn't closed correctly and so still has a small leak between beats that is being monitored very closely.
Thank you for taking time to read this and I hope you have found what you read interesting. Today is the day the British Heart Foundation are raising money to keep researching and operating to keep kids like my baby alive. If you can please donate a few pennies to the cause. Donate online or nip into your local as a this weekend and chuck a few pence in a bucket for them. Thanks
http://en.m.wikipedia.org/wiki/Coarctation_of_the_aorta
http://en.m.wikipedia.org/wiki/Atrioventricular_septal_defect