Long time readers of my blog will know that my daughter Katie has a Complex CHD (Congenital Heart Disease).
Katie was born with a complex condition called Tricuspid Atresia which caused HRHS (Hypoplastic Right Heart Syndrome) it’s caused when the tricuspid valve is either not formed or fails to grow correctly, which then causes the right ventricle of the heart to not form properly or not grow at all.
Babies born with this condition need a series of life prolonging surgeries (HRHS can’t bee corrected or fixed). These surgeries collectively are called The Fontan.
While the above is a very basic description of Katie’s condition it’s really all that you need to know to read this post. Even to this day I still struggle to understand all the complexities of her condition, most average parents do.
Anyway, one of the side affects of the life prolonging surgeries is that some children develop rhythm issues in their hearts. Their little hearts have undergone at least 3, if not more major heart surgeries and its creates scaring on the heart. These scares can interfere with the electrical systems of the heart and cause long-term issues with the functioning of the Fontan and the surviving Left Ventricle Some times this happens right away, sometimes it happens due to growth of the heart and sometimes they do not really know why.
Over the past few years we have had what most call a dream run with Miss Katie’s health, it’s the kinda like almost too good of a run……the kind that keeps CHD Mummas on the edge and thinking can this be real…..(other CHD Mummas will get this!).
Then Miss Katie had her routine 6 monthly appointment with her Cardiologist in August last year, he noticed a few changes on her ECG, and he suggested she have a 24 hour Holter Monitor test done.
The Holter Monitor in is a mini ECG monitor that is connected to you for 24 hours, while you go about your normal activity and it records what your heart does in that 24 hours, its then taken back to the hospital and analysed.
She had that done and we returned home, and heard nothing. We knew the Cardiologist was away for extended leave but presumed we would get a call from our local GP if anything was wrong.
One thing I should have learnt by now as a CHD Mumma is that you never presume anything.
Lets just say that on return from his leave our Cardiologist found a report on his desk and called us to say things are not okay……..
CHD SUCKS, it really does.
It kicks you in the stomach, it knocks the wind out of your lungs and as a mother it NEVER EVER gets any easier to hear that your child is not doing okay.
Miss Katie has some issues going on, we are not really sure how bad, her Cardiologist is fairly new to us, I can’t read him like I could Miss Katie’s old one, the amazing Dr J who had been with us from the minute we decided to make her our daughter……He stood alongside us for a long hard journey and he was very up front, very honest and very practical and I liked that. Our new guy is good, I just haven’t learnt to read him and I think he is having issues understanding me. I need up front, honest…..don’t sugar coat it, don’t think you have to protect me…….I need it real so I can deal with it.
Being called at home by your Childs Cardiologist always fills me with fear, but this time is took the wind out of me…I had stupidly thought everything was okay when we heard nothing……..Our good run health wise had come to an end.
As I mentioned Miss Katie has several issues going on and although we do not know how bad at present, we know that when your Cardiologist says “plan on a week stay in the city” it’s never good……..or maybe I am just preparing for the worst, maybe after all these years, I am losing my ability to look on the bright side, maybe I am just real, maybe I am broken by CHD……who knows
………..but I have this sinking feeling and I am rarely wrong, don’t get me wrong I want to want to be wrong………but CHD SUCKS, its evil, it takes our babies, our children, our sisters, our brothers, our aunts and uncles, its takes our friends……. and it’s hard to shake that feeling of dread that comes with “plan on a weeks stay” because that often times means 2 or 3 weeks, it often means issues, big issues…….I really hope I am wrong, I hope CHD proves me wrong for once.
I am trying to be positive, Please pray for us, please pray that CHD will lose again and that she will smack it down and keep moving forward. Miss Katie is such a fighter, she has won the battle with CHD so many times…….she is my joy, my precious beautiful girl and I need her to win.