My Son has TOF

Posted , 5 users are following.

My son was born on April and shortly after we found out he had tetralogy of fallot. He looks healthy and at 5months no problems so far! i just worry about the unknown, theres lots of questions i want to ask our cardiologist but im afraid of the answers. Id love to hear from anyone who has had a child and had or is about to have corrective surgery and also what to expect when the \"blue spells\" start. Id really appreciate your advice.

Thanks

Susan[size=18:1ce8b80b6e][/size:1ce8b80b6e]

0 likes, 9 replies

Report / Delete

9 Replies

  • Posted

    Hi Susan

    Of course you are worried - but you will cope with this.

    You will manage the blue spells too - you will find your own way of dealing with the problems. We found it was better to keep him cooler - for example we didn't put his feet in the baby grow - he had lots of little sleeps - and fed little but often, just little hings like that really.

    Please read the nightmare of fallows on the experience page, this was about my grandson.

    Our grandson did not have really bad blue spells - sometimes he would just cry a lot and eventually would go a bit blue with crying so much. He would then just go to sleep with sheer exhaustion.

    I know how anxious you must be, as we were just the same.

    Be strong - you will get through it all - he will always be your special little boy.

    God bless you.

    Report / Delete Reply
  • Posted

    :D

    Hi my daughter was born in April of 2007 also has TOF and AV canal, we are about to go for her complete repair next week. It has been a very up and down time, but we have been very fortunate to have had a very understanding and supportive medical team close by so that if I was ever worried or concerned a phone call or visit to our local PA unit was not a fuss.

    Yes I worry all the time but I found that if the medical staff are not concerned or don't look worried then I didn't. I have seen them move very quick when things have not gone according to plan and have positive outcomes.

    I wish you luck with your son.

    Report / Delete Reply
  • Posted

    Hi my daughter was born in April of 2007 also has TOF and AV canal, we are about to go for her complete repair next week. It has been a very up and down time, but we have been very fortunate to have had a very understanding and supportive medical team close by so that if I was ever worried or concerned a phone call or visit to our local PA unit was not a fuss.

    Yes I worry all the time but I found that if the medical staff are not concerned or don't look worried then I didn't. I have seen them move very very quick when things have not gone according to plan and have positive outcomes. I have also found they really do get to know your child and do notice when things are not normal.

    I no the unknown is so so so hard, I have sometimes wish i had a crystal ball so i could see how things work out but really the only thing is to enjoy today, enjoy the smiles, hugs and kisses because they are really the only memories you want.

    I wish you luck with your son.

    Report / Delete Reply
  • Posted

    Hi Susan, My son is now 9 years old ,but from the age of 4 weeks had tet spells. He would cry non-stop for about 2 hours at a time and always had a purple tinge to his skin. He was often floppy after a spell and his breayhing was shorter and shallower. From what I have been told by cardiologists, they prefer to hold of on doing full repairs on children under 12 months due to the fact that there hearts are so little, if necessary they will do a shunt first. Treat your child as normally as possible and just watch for colds etc. Good luck!
    Report / Delete Reply
  • Posted

    smile

    THANK YOU TO EVERYONE WHO OFFERED ME ADVICE, IT WAS GREATLY APPRECIATED.

    MY SON IS NOW 11 MONTHS OLD AND IS' A LITTLE BUNDLE OF JOY.

    HE HAS NEVER HAD A \"BLUE SPELL\" THANK GOD AND IS ALREADY TRYING TO WALK!

    HE IS TO HAVE CORRECTIVE SURGERY WITHIN 4 MONTHS AT YORKHILL HOSPITAL IN GLASGOW, AND TO BE HONEST I COULDN'T WISH FOR A BETTER TEAM OF DOCTORS!

    I WILL KEEP YOU UPDATED ON HIS PROGRESS.

    THANKS AGAIN, SUSAN

    Report / Delete Reply
  • Posted

    Hi Susan

    My son was born oct 05 he is coming up to 3 years of age now he is about to have the shunt taken out and the hole closed at alder hey childrens hospital as his dad i am scared but i no he will be ok as he looks like any normal boy things were hard at first when he was born we found out of his condition when 18 days old

    we have 4 boys in total 1 younger than my son who was born with no problems

    I hope everthing works out for you if you can get treated at alder hey i would highly recommend there as they are fantastic people

    Report / Delete Reply
  • Posted

    Hi susan, I thought you may like to hear of my experience of this condition. My son was born with this condition plus a few variations, he was diagnosed at 2 days old, I sensed something was not right when is gave birth as he felt 'chesty' to me! he was my fourth child so i knew what to expect,. the midwife said it was just some mucus! anyway to cut a long story short. he was rushed to the royal brompton hospital at 2 days old for an echo cardiogram, I was so scared for him,. I was told he would have blue moments and he was seen at my local hospital by a heart surgeon from the brompton as well as a local paediatrician. His health was remarkably good. he was reviewed every 6 months. he required no medication at all and he went on to be a happy and healthy child., he had his first surgery at 13 years old and we were told that he may need it repeated in his 30's. He recovered well and grew into a lovely adult. He has just gone through his second op at 22 years as they said he had scar tissue that was causing problems. he is now recovering very well indeed and is hoping to go back to work in march! his op was in november. it is so surprising how well they recover. When they have blue moments you just sit with them and make them take deep breaths. my son only suffered these rarely. and mostly in the swimming pool because he got too cold . so i hope this is helpful to you, i know it is so worrying but time passes quickly and you must treasure each moment with your child. good luck for the future wishing your child good health throughout their life., god bless, julie
    Report / Delete Reply
  • Posted

    Hi Susan , my daughter is 2 and half weeks old, was diagnosed 2 days old, she will be treated at Yorkhill, I just wanted to know about your experience. Thanks x
    Report / Delete Reply
  • Posted

    Hi I was born with TOF and that was 43 years ago! Corrective surgery was so new then. I had my first operation at 6 weeks old, and several more over the years. I can imagine the question that are going around your mind. I'm sure your son will be fine, we have brilliant heart doctors and medical staff. If you have any questions please ask.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up