My Story of Growing up with CHD [ToF)
by Christy Smith
Lets see were to start. First off I was born on August 19,1977 to my parents John & Nancy. At that time my parents did not know that their was something wrong with their baby girl, well not until I was born. I came into the world uncertain of my furture. I was born a “blue Tet baby.”The doctors just told my mom I was sick, like most new parents they did not know what CHD was, REMEMBER this is in the 70′s. They were to find out that I was born with Tetralogy of Fallot which is a complex congential heart defect there were 4 parts of my heart that had not developed during urto.
I had my first surgery at 2 years old – all I had done then was the full repair. So I don’t remember much of my childhood all I know is that I spent most of it in and out of hospitals and that I was also labaled as Failuare TO Thrive which means I also had trouble gaining weight, some mild learning disabilities, speech delays and was always SICK!!
That is all behind me now. I had come so far in life, that the doctors were shocked, you see I was only given maybe 30 days to 6 years to live. I was gowing up before my parents eyes. I have lead a “normal” childhood. I have had some minor surgeries throughout my childhood. (not heart related) – tonsils removed, andions removed, my Cleft plate fix and some female issues like ENDO and I.T.P which is a bleeding disorder diagnosed in 1997 and the good old tubes tied. All through growing up I was a very Active CHILD. I played Soccer (football), softball, and did track and cross country running in high school (with the ok and care of my heart doctor that is). I had NO restrictions. That is some of what I can remember of my childhood now we are off to ADULT HOOD!!
Our son ‘TJ‘
DiGeorge Syndome about 1-68 childern will have CHD and the and ratio for DiGeorge Syndrome is about 1:1,800 births.
Two weeks later TJ was back in the hosptial and admitted to the PICU as a result of Aseptic Meningitis. He was scheduled that week to have the BT-Shunt due to increasing duskingness and TJ had the BT-Shunt on August 23, 2002.
TJ was a happy baby and the doctor says he was healthy enough to have is full repair done and that was scheduled for April 24 2003.
Then the big day came for his full repair done of Tetralogy of fallot.
TJ was only in there for 4 days but needed to come home with MEDS AND LOTS OF IT!! HE HAD SUFFERED A SMALL STOKE AND BLOOD CLOT. He was on 1/2 aspirin and lovenox every 12 hours for 2 WEEKS. I hated giving my baby a shot in the arms and we had to alter what part of the legs or arms we gave the shot. Just to remember what arm or leg I gave him the shot I had marked his body with marker for that week!!
(Pic to the left: TJ The first year of TJ spent days and months in hospital. its was his 2nd open heart surgery)
In no time at all TJ was growing up SOOOOO Fast!! We gave him the biggest birthday party when he reached ONE!! that was a big step for us!! to watch our little figher reach a milestone!!
So TJ has grown up to be a “active Heatlhy SIX YEAR OLD” he is in school and is doing great, however, he does have some set backs because he also has some mild learning disabilities and some speech delays. TJ also had some other operation which were not heart related – Ear TUBES twice.
So far he has had no more surgeries but in near furture he will need more we will deal with that when the time is near.
Now, back to me – just when life was going great with family life, holding down a job I was faced with having other surgery!
Before I had my surgery I had a few Symptoms:
I could not walk to my mail box or shopping at Walmart or the mall and doing the housework took me all day. LIFE HAD SUCKED IN THAT YEAR. I started to feel it in the Spring time and by then I had already been seen by my heart doctor and I thought it will get better and I’ll see him in a year. The longer I waited the worst I got. That was in 2006 and by September 2007 I told my doctor all the symptoms that I was feeling/having. He ordered a blood test, stress test, M.R.I – you name it I had it all. When I went back in 3 months I took my mother with me for support. I had dreaded the worst – The doctor came in and looked at my mother and said “Good YOUR HERE!”
On December7, 2007 I had my surgery. Talk about how technology had changed before my first surgery!! I was in a month before and had to stay another 6 months after (from my mom) I was in for about a week. I was a bit scared going though another surgery and I was worrying my self sick on the what IFS.
It has been almost a year and I have never felt better. I am back to being me and I love shopping NOW lol. I am also back to work and being a mom that can now outlast her active little boy.
I won’t see my heart Dr until June 2009 and I have taken up step and signed up for the gym. My Cow Valve will be good for the next 20 to 30 years.
TJ went back to his heart doctor on November, 11, 2008 and we don’t go back for a year.
Overall, we are all healthy on that part but now its a wait and see game for TJ when and where he’ll have his 3rd heart operation.
It has been a rough and hard long road to get where we are today but by being able to tell all the new “heart families facing the uncertanty of their chd baby to the unknown furture”
We have to take it in strides and we don’t let our heart defect get the better of us.
’TJ’s Walkers’ after the American Heart Association Walk in 2008
WE CAN BEAT THIS THING and STILL WIN IT and let the world know that we can lead a “NORMAL LIFE”
Enjoy the little things in life, never take it for granted and always give back. Live and Let LIVE!
Blessed be to all who reads this
Tetralogy Of Fallot Statistics:
Approximately 25% of untreated patients with ToF die within the first year of life:40% by 4 years,
70% by 10 years and,
95% by 40 yearsTetralogy of fallot: occurs in about two out of every 10,00 births and occurs equally in boys and in girls.