Monday, August 17, 2009

CHD "But they can fix holes in the heart?"

I think the most common thing I hear as a CHD mum when I tell people that my child has a Heart condition is “But can’t they fix all holes in the heart now” If only that firstly was true and secondly my Childs issue, My Daughter Katie and My Son Jack both have CHD, congenital Heart disease/defects.

Jack’s condition was “fix” as a baby and toddler in a 2 stage complete repair, but Katie has a more complex condition which I am not sure I have share alot about here so I thought I would.

Some of you might of guessed her condition is serious because she was granted a amazing "Wish" from "Make a wish Australia" Were the whole family was flown to Florida Disney world for a week, We stayed at the Amazing “Give Kids the World” and visited all the amazing parks and attractions around Florida, you can check out the diary of the trip here "Katies Make a Wish trip"

So I thought I would start at the beginning and try to explain her condition and give you all some insight of the daily struggles that kids with CHD have.

CHD is the most common birth defect, affecting 1 infant in every Hundred,(400000 in the US alone a year) these conditions can range from a range of complex list conditions similar to Katie’s to a hole which we in the CHD world call ASD, or VSD’s and to conditions that include the Electrical pathways of the heart. CHD affects all races, and doesn't care how much money you have or what your religion is! Mostly the causes are not known; some do have a genetic link but most do not. It is not thought to be the fault of anyone, just as the luck of the draw so to speak, some luck some would say!

if you would like to know more about the statistics you can check it out here CHD Awareness Org

Katie was born with a Condition called Tricuspid Artesia, basically the Tricuspid Valve doesn't form or work and there for blood is not pumped well enough into the right ventricle and so it is either small of doesn't grow at all. The Boston Children’s Hospital explains it in layman’s terms here "My Child has Tricuspid Artesia"

Here is a picture of a Heart with Tricuspid Artesia.

and a picture of a normal heart

Katie has had 3 heart surgeries since she was born, which compared to some of her friends is great, Katie has had the Fontan series of surgeries done to prolong life and give the child good quality of life, here in Australia is done in 3 parts, A Shunt as a infant to help with oxygen getting around her body, then as a older infant (9 months) she had a Hemi Fontan (Glenn) procedure done and then when she was 2 she needed to have the Fontan surgeries completed, Dr usually like to do this a little older but Katie lung pressures were too high and she had to have the surgery at 2.

Basically there is no way to completely fix this condition, but the Fontana procedures have given us all alot of hope for the future. Katie still struggles daily, she lives with a Oxygen level of about 85%, for you and I that would have us unable to function and very unwell, but Katie’s body over the years has learned to function on a lower oxygen rate, it of course comes at a price, one that we deal with daily, she is Tiny, only 22kg (50pounds) at 11, she struggles playing sport, running and walking up stairs. She struggles in the heat and in the cold, she has alot of trouble dealing with common colds and illnesses, and she has to work very hard to stay up to date with school work. BUT OHHH gosh she is a fighter, when I think of the first time I saw here, this tiny 4 kg little 8 month old laying helpless in a hospital bed unable to raise her head or sit........It’s hard to imagine I have that same baby now grown giving me attitude in true tween style. CHD is a long and hard road, it affects everyone, I once heard it described like a Horror nightmare that you can't wake from, I wouldn't go that far.........but I will say this the biggest, rollercoaster rides in Disney are no match for the CHD rollercoaster ride

CHD affects many families, many of you would know of Stellan He has the type of CHD that affects the electrics of his heart, this is just as big of an issue as a structural defect, Please continue to pray for him.

1 comment:

  1. wow I didn't know so much about Katie.
    What a beautiful amazing and wonderful little girl she is ?
    The question might sound stupid but would a heart transplant help Katie ?
    I know about Stellan too I pray for him and McKmama