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my daughteris 18 weeks old and has tetralogy of fallots....

Posted , 4 users are following.

laurenmariex
laurenmariex

Doctors and surgeons are now beginning to discuss her surgery and im terrified... im just so scared of my baby going through this! I dont know anyone with this condition etc and although my partners a great man and dad, he wont speak about stuff and im just hoping someone with experience in this condition could reply and speak with me about their experiences and successes? Thanks so much. ...

0 likes, 10 replies

10 Replies

  • Bill_R
    Bill_R laurenmariex

    Posted

    Dear Lauren,

    I was born with Tetrology of Fallot in 1952 when the hope for survival was minimal. They performed what they called the Blalock/Tussant shunt at the age of 5. I do not know if they still perform it today.

    Today it is a lot different. They can perform surgery at such a young age the child grows up to have a very normal, active childhold & adulthood. I went through open heart at the age of 20 & lived a normal healthy life. From 5-20 years of age I missed out on a lot but your daughter should have a normal, healthy, active life from a young age because of the advances made in the treatment of Tetrology.

    I am now 62 years of age, which I do not feel & I did have two heart surgeries, one at age 49 & the other last year. I feel great. Whether your daughter has to have additional surgeries I can't answer but I will tell you that even is she did, she will have a nice, active childhood & adulthood because after my open heart at age 20 I was pretty active until I had surgery 29 years later.

    Your daughter will be just fine. Ask a lot of questions, do research which my parents did not have too much of back in 1952. Your daughter will be great & if you need to communicate more, I'll do what I can.

  • laurenmariex
    laurenmariex

    Posted

    Thats amazing Bill.. thanks for replying to my question.. its nice to hear of something positive! Do you mind if I ask why you had more than one open heart surgery? Did somethig change?
    • Bill_R
      Bill_R laurenmariex

      Posted

      I had open heart surgery at age 20 to correct the terology and I was good, active and able to work & do what young adult men do. Prior to open heart I was limited to what I could do. At age 49 I starting feeling symptoms such as; shortness of breath and lightheadness, so in 1999 I went through open heart surgery again where I was given an aortic valve replacement because of a leaky aortic valve. Last year was not open heart but I had a mital valve replaced because that was also leaking. I am doing fine. In fact, sometimes I almost feel similar to the surgery after age 20.

      I don't know if your daughter will have to undergo future surgeries but suffice to say if she does, it will less invasive & she will be fine. I'll pray for her.

    • laurenmariex
      laurenmariex Bill_R

      Posted

      Thanks so much for your reply.. its just so horrible that it feels like ours and aillies lives are on hold.... doctors arent very helpful and nothing is really explained well.. I just feel in the dark about it all and still find it very hard to understand what my girls going to go through in her life.. you have helped and thank yiu

    • Mardybag
      Mardybag laurenmariex

      Posted

      Yes Bill R is entirely right about futher surgeries. As the most common long term issue with fallots patients is leaky valves and now at least three: the pulmonary, mitral and aortic can all be replaced by a catheter (small tube up the leg) and require an average of less than a weeks stay in hospital. 

      This is I know as I am a older teenager who had a single stage fallots repair age three months and will in the foreseeable future need a valve

      replacement and also my mum was a cardiac specialist radiographer who regularly assisted on non-invasive valve replacements.

      May I also assure the results of Fallots Repair do give an extraordinary quality of life. Despite my cardiac condition I went on to compete at the Swimming National Age Group Championships with my healthy counterparts. Often limits after are mental not physical. Continue ask questions if you wish.

  • kimberley01498
    kimberley01498 laurenmariex

    Posted

    Hi Laurenmariex. 

    I was born in '92 and my parents were told I had ToF when I was a few weeks old. At 15 months and 3 years doctors rectified my VSD and Pulmonary Artesia. Small vessels were also leading off in to my cchest cavity (collaterals) these were always fixed during one of those open Heart surgeries.  

    I carried on having cardiac balloon catheterisation procedures (key hole) every year or so to allow my new artery to stretch as I grew. Only ever spent two nights in hospital.  

    I was incredibly active as a child and into my teens. It was only when I turned 18 that I got sick. I've not long turned 22 and after having a pulmonary valve replacement and some scare tissue removed from my heart I have been given the all clear. 

    I know I will need another open heart procedure in the future but for now I am a 'normal' young lady.  

    I hope this is able helps a small amount. medicine has come on leaps and bounds since I was a baby and I've even had some procedures done under a local anaesthetic.  Doctors are amazing.  

    X

    • Bill_R
      Bill_R kimberley01498

      Posted

      Dear Kimberly,

      I was born 40 years before you with ToF & have undergone 4 surgeries since including a Aortic Valve replacement & a mitral valve repair. They have really come a long way in the treatment of ToF. You had open heart at 15 mo. I had to wait until I was 20 yrs of age for open heart surgery. I think it is great & I am glad you are doing well & from what I hear & read about future surgeries, they will be less invasive with much shorter recovery time. Cudos to you & a long, long, active life.

    • laurenmariex
      laurenmariex kimberley01498

      Posted

      Hi kimberley. Thanks for your reply. Everyones information really helps me. I don't know anyone with the condition so its good to hear peoples stories. 
  • Bill_R
    Bill_R laurenmariex

    Posted

    Dear Larenmariex,

    I hope your daughter is doing well & you & your husband are holding up also.

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