need to talk to people going through the same!

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Our son was diagnosed with Tetralogy of fallot 6 weeks ago at 3 and a half months after a trip to the GP with a bad cough and chest infection. We were sent to our local hospital from the GP surgery and then sent to Alder Hey the next day where he was diagnosed after a scan. He hasn't had any blue spells and feeds really well - he is a very good weight for his age. We came home from hospital after 2 weeks of monitoring and he is now on propranalol 3 times a day. He has been back to clinic since and they were pleased with him and hope to wait until he is 12 months before doing surgery. He will need to go back to clinic every 6-8 weeks. He also has a nurse visit at home every 2 weeks to check his SATS are ok and so far they have been fine.

The thing is, even though the doctors are all pleased with him and happy for him to carry on at home - I just can't stop worrying about it. We have put him in his own room at night now and I feel so guilty! I lie awake wondering if he is ok and checking on him all the time. Every time he crys I worry thet he's having a spell or that he might turn blue. I was so happy when we came home from hospital but it's just hit me all of a sudden this week - I spent all day yesterday sobbing!!! I don't feel like I can talk to my parents as they are very emotional about the situation and i don't want to upset them and whenever I mention it to my husband he just says \"he will be fine\" but will he I wonder? I wish i was coping better for his sake because I just want him to be treated normally by everyone and enjoy being a normal baby. It would be good to hear from anyone going through the same thing or anyone who has been through this situation.

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8 Replies

  • Posted

    Hi, I am 7 months pregnant with a little girl and she has been diagnosed with TOF. I recently see that you posted your story and I was hoping that maybe we could talk. Please reply back to the post! Thank you, Gretchen
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  • Posted

    Hi Gretchen, would be great to speak to someone else going throught the same thing. I assume your baby was diagnosed at the 20 week scan? Do they have a treatment plan for her yet?

    Rachel

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  • Posted

    Tetralogy of Fallot varies in it's severity. It sounds as though your son has a relatively mild form of the defect. I have two children living with tet. My daughter was diagnosed shortly after her birth and underwent three open heart surgeries with the first nine weeks of her life. She is now six years old. She has an internal pacemaker but is otherwise doing very well. She has had two more surgeries.

    Our second child is four and does not have the defect. We were told that there was only a small chance that we would have another child with tet so we tried for number three, hoping for a boy. We got the boy but he too has tetralogy of fallot. He is two years old and has had four open heart surgeries. He is now doing fine.

    If I could offer some advice, it would be to choose the hospital, cardiologist and surgeon after doing a great deal of research. My daughters surgeries were all done at San Diego Children's Hospital and the care was adequate.

    My son's first three surgeries were done at Children's Hospital in Salt Lake City. The surgeon did a very poor job. His lack of knowledge resulted in a long term health issue. I can not go into detail at this time. The best pediatric cardiac surgeon is Dr Hanley at Standford. I know that there are good surgeons at Boston Children's as well.

    It's also worth noting that I too have tetralogy of fallot. I am in my 30\"s and doing well. This is a genetic disease regardless of what your doctor may tell you. The long term prognosis is good and your child will most likely NOT have any physical restriction.

    I wish you and your child the best of luck, and please remember to look closely at your child's doctor and verify their experience and credentials in addressing the defect. Feel free to reply if you have any other questions that me or my wife may be able to answer for you.

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  • Posted

    Hi,

    I've just read your story having re-visited this site after some time.

    I understand exactly how anxious you must feel, as we too had our baby boy diagnosed with Tetralogy of Fallot at just 1 day old !!

    After a stay in hospital when he was born (about 10 days) in June 2008, mainly for observations, he managed to stay really well. He fed well and grew along a normal growth pattern.

    The dreaded Tet Spells (Blue Spells) didn't really occur until he was about 10 months old. When they did occur they would happen around his lunchtime feed, and they'd last for about 2-5 mins. However after a cuddle with knees brought up to his chest, he would return to normal again - (thankfully) !

    The good news is that Charlie had his surgery (Total Repair) in Alder Hey Children's Hospital in June this year, just a few weeks ago, and is doing really well. He was in hospital for a week, and was then able to come home.

    If your child is being treated at Alder Hey, then what I can say is he will be in really good hands as the Cardiac Team there are marvellous.

    We will be forever grateful to all the Doctors and Nurses who looked after Charlie during his stay with them.

    I hope this info is of some help to you. Please feel free to make contact if you would like to ask any questions.

    Stephen.

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  • Posted

    Hi. My son was diagnosed with Fallots last September aged 10months.It was a complete and utter shock and we were all devestated.He had shown no signs of illness other than starting to get grumpy every now and then for no apparent reason. Within 8 weeks he has his first surgery - seven hours long at the Freeman - torture! He was in PICU for two days and then on the ward in isolation for a week but then home in time for Xmas. He has since had a cardiac catheterisation as his pulmonary arteries (branches) are still too narrow. This didn't work either so unfortunately we are now waiting for another open heart op to try to fix that! WHen his murmour was picked up at a routine Dr appointment - we thought nothing of it but I still feel shocked that he was living with SATS of 81% max (on full oxygen) and we didn't know. Anyway, it is very very scary and we cried for days (and still do now and then) but even the nurses in PICU said that out of all the Heart problems to have - this is a good one as it is more or less fixable and life expectancy is normal.

    I hope that the operation is soon for you as the waiting is the worst part. My son is a real little boy and certainly doesn't act like he has heart problems - I know a few Fallow's babies now and they are all doing really well. I can't stop you worrying but you know that you aren't alone - there are lots of us out here and any questions you have - I will try to help with. Stay positive - the surgeons are fantastic and it will all be behind you soon.

    x

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  • Posted

    [color=blue:9fa2e13205][/color:9fa2e13205]

    As I read your stories I was overwhelmed and excited by the thought that there are several of us dealing with this condition. Well, my daughter is now 24 years old, just had her second open heart surgery at St. Joseph Hospital and I should say, we were all very pleased at the result. On March 17th, she had an angiogram and found that her pulmonary valve was leaking profusely. We were devastated and scared. 5 weeks later (her surgery was scheduled on June 16th), she's now almost back to her normal self. She lost 10 lbs, which was the only devastating fact since she was very little to begin with, but that was an expectation. Other than that, she does not need Cardiac Rehab. and tries to walk at least 30 minutes a day, in increments of 3x a day. This week, she went further than that. I tried to wean myself out of worrying and let her go on with her life.

    Her first surgery was when she was 15 months old in UCLA. Our goal was to have it done when she was 2 years old but could not wait since she was running us down. I have to quit working as she turned blue when she cried longer than a few minutes. She's so tiny and delicate that we did not trust anyone to watch her except her grandparents. That surgery was very successful that even her current cardiologist was amazed at the work Dr. Drinkwater did to her heart (she had a hole in the middle of the 4 chambers). By the way, we also just found out that she has a DiGeorge syndrome, a Q22.11 deletion (missing chromosomes) and carried some of the symptoms other than TOF.

    I would suggest that you should stay postive no matter what. Pray hard, and work with your doctors. Make sure that you understand everything, know what to do and research in the internet for anything that you do not understand. My daughter has two more semesters to go before she finishes her bachelors in Sociology/Gerontology in CalState Fullerton. I will be happy to be of a support to anyone out there.... God bless.

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  • Posted

    I was diagnosed with a heart murmur at 3 days old. My parents were told to go home and keep an eye on me, and go to A&E if I stopped breathing or went blue. It sounds really crazy doesn't it? I'm 20 now. My mum went through the exact same thing. Always checking on me at night and stuff. You'll be more comfortable with it in time, just try to treat your child like any other, within reason. I have an ASD and a VSD among other things. I'm in a wheelchair but happy and independent. Obviously heart diseases vary a lot. It might interest you to know that American two time Olympic gold medalist snowboarder Shaun White has tetralogy of Fallot. So it does not mean that your child won't lead an almost normal life.

    Just try not to beat yourself up about it. It's just a bit of bad luck that this has happened. You'll feel better when you start to get your head around it. It's a massive thing to deal with but once it's been sorted out in your head, everything goes on as normal.

    If you fancy reading about someone else who has heart disease have a look at my blog smile everyone deals with illness differently but it might be helpful. www.thegirlwithheartdisease.blogspot.co.uk

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  • Posted

    Hi I am to have my 5th surgery due to fallots An feeling very nervous any body else been threw same thing just need a ill advice xx
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