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supra ski boats
how is a child is affected in daily life, from having congenital heart defects?
My friend and i are doing a project and we were wondering what a child goes threw when having this defect.
What exactly do you want to know? Maybe if you post some specific questions I'll try to answer them (or just email me).
BTW, there isn't just one type of heart defect; there are nearly 40 different recognised type of defect(s). A lot of what a kid with heart defects goes through will depend on their individual defect; I'm 13 and have had 20 or more heart operations, there was another girl posting here who has heart defects, was now aged 20 and had never had any sort of heart surgery.
Anyways, Hi! I'm a 13 year old girl who was born with complex hypoplastic left heart syndrome and supra-cardiac total anonymous pulmonary veinous drainage. At its simplest I was born with only half a heart and the blood supply between my heart and lungs was all shot.
In 1977 my Nanna gave birth to a baby girl, my aunty Cara. She was born with HLHS too. She lived for 4 days. In 1997 my mum gave birth to me. Thankfully things have changed heaps in the intervening 20 years.
(HLHS babies were left to die up until 1990 in Australia (my birthplace) and in Britain. I know of one British mum who, as recently as 2005, gave birth to a baby with the same heart defects as me; and the surgeons were not prepared to even try to save her baby cuz they believed he'd have to spend his whole childhood in hospital having operations and he wouldn't have any quality of life (which IMO was crap)! I'm VERY glad I was born in Australia and that the docs at my hospital (Great Ormond Street) don't think like that!!
Had my first heart surgery at 3 days old, my most recent earlier this year. I've also had heaps of general anaesthetics in between times for tests etc. Three times before I left hospital at 6 months old my parents were given the option of turning off my machines and letting me die peacefully in their arms.
They tell you kids with HLHS will never run, never ride a bike, never kick a football, but that's not true. I know HLHS kids who show no clue to their CHD and run around and play with the healthiest of healthy heart kids. At times in my life I've managed to ride horses, sail boats, learn to ski, live for 9 months in PNG and raised orphan baby elephants in Kenya. As a group, we're growing up, going to school, having friends, playing sports, going off to uni, going to work, getting married and, depending on the defect, having kids of our own. I even know of 3 heartkids who successfully cycled 1,000+ miles for charity.
At the moment tho. I take approx. 45 tablets a day, weigh barely 6 stone, sleep for around 14 hours a day and am always freezing cold. I have the charcteristic "stubby" fingers and toes of a heart kid, and the blue lips and nails. I had my third stage operation (the Fontan) in 2001 but then had it taken down cuz it was causing more problems than it was helping. Apparently I told my cardiologist "I was born blue and I'll die blue". This year I've been getting increasingly tired, breathless, lungs and legs full of fluid. Trying to decide whether to have another go at the Fontan or go on the active transplant list for a heart transplant. At the moment I can't even wash my own hair, Mum has to do it for me. I can't walk that far either. I have to go to the doctors once a week for blood tests; they don't bother asking me for my name anymore at the doctors or the pharmacy; they all know it already. I chose to leave school and become home educated for a number of reasons, not all of them to do with my heart, risk of infection etc etc. I could no longer go to school at the moment even if I wanted to, not fulltime. I do go for one morning a week but even that's becoming a struggle more and more. I have all the attachment issues, emotional and behavioural problems that are so common in kids who've spent a lot of time in hospital. My sister, 3 years older than me, has her own issues too (sometimes I think that girl has got a death wish all of her own and that is all because of me). My brother, 5 years older, seems to have by some miracle escaped unscathed. What I don't have is any of the learning disabilities which are apparently quite common in CHD/HLHS kids.
What is it like to have a child with a CHD?
It’s Lasix, Aspirin, Captopril, Warfarin;
It’s monitors and oxygen tanks;
It’s feeding tubes, calories, much needed weight gain;
It’s physio, speech therapy and OT;
It’s making the hospital a home for a while.
It’s checking her sats as the feeding pump’s beeping;
It’s knowing that there is just no time for sleeping;
It's trackies and suction, stumbling bleary eyed at 2 am;
It’s catheters, x-rays and boo boos to kiss;
It’s normalcy I sometimes miss.
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Off Season Wakeboard Tower Installation for Supra Ski Boats
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