Mother and Son Living with Tetralogy of Fallot

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!!

Adulthood
O.K so being 18 I was a “PARTY GIRL” I did what my friends were doing and then some.  I got some tattoos, drank, etc, etc and then I met my husband.  I always had a hard time telling my boyfriends about my health problems and showing my scar.  My husband told me it was my love for LIFE what he liked about me.  He was shocked that I had a heart defect.  To cut a long story short – we got married in 2001 when I was 23, and a few months into our marraige…… We found out that I was Prengant!! I was scared and happy all at once because of my heart defect and the what “IFS” in life.

Pregnancy

I was considered “HIGH RISK.” and was watched closley and monitored alot.  As far as I was aware the pregnancy was a very good pregancy and the baby was going good and, growing but it was during the 5th month of being pregnant that I received the worst news EVER.  This is when I had the Faetal ECO – our “baby boy” was diagosed with CHD, the same CHD that I have which Tetralogy Of Fallot.   The Doctors told me it was a 50/50 chance that I would pass it to our “Baby.”  They gave me all the run arounds with the defect and they gave me a choice to abort my pregancy, however I am pro- chioce and I had thought along with my husband and my family really HARD!  But I did keep it going!  It was going to be a long tough road ahead BUT God only gives you what you can handle and that I was going to be a special mother to a special child.  TJ Hunter came into a uncertain future and world on August 2, 2002 weighing in at 8lbs and 3oz and the best news  was that TJ was born at 38 weeks via Cearean section.

Our son ‘TJ
At first TJ was a “Pink Tet” baby  following his birth and he was admitted shorty after to NICU where he was given oxgyen and was weaned quickly after. At day 2 TJ was circumcised and went in to heart failure 3 times that same day and almost died on us.  He finally came home on day seven but in that time frame he was diagnosed with DiGeorge Syndome.

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.
We were constantly back and forth to the E.R. in that YEAR with sleepless nights and hospital over nights and before surgery TJ was back in the hospitial in october of 2002.

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:

  • Shortness of breath
  • Chronic lack of energy
  • Major headaches
  • Always tired
  • MY COLOR WAS LIKE OF DEATH AS MY FAMILY WOULD SAY!!

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!”

IN NEED OF SURGERY
. MY Pulmonary valve was not working at all, maybe 25% of the time.  I was getting little O2 going in and that would explain the headaches and other symptoms.  Needless to say we went to see our good old Heart surgen Dr. Neil Devejian. (he worked on my son!) I was so greatful to have him as my surgeon that I knew and liked.  It was the first for Dr Devejian to work on a mother and a son as it is normally a brother or/and sister.

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
in love and light always
Christy

Related Links:
If you would like to contact Christy, you can do so via Facebook:
Facebook – Christy’s Profile Page
To read Christy’s story of her and TJ’s Heart Walk 2009, click here
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.