My daughter was born with tetralogy of fallot, i know wh...

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My daughter was born with tetralogy of fallot, i know what to look for to keep her safe. but i would really like to know what i'am in for. what the surgery is going to be like and what will she be like after. i have never met anyone who has had a child with this condidtion. everything that iam being told is leading me to believe that i wont have my baby for much longer, even if she dose keep on fighting she will never have a normal life or at least as normal as it can be.

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  • Posted

    We have been through what you are experiencing right now, my son had corrective surgery at the age of 6 Months, he was born with the condition but our doctors had only ever seen one case in ten years and didn't spot what was wrong with him,probably like you we had never heard of Fallots or knew anyone else who had.As soon as we went to the hospital the experts talked us through all the proceedures and showed us the Intensive Care unit prior to our sons operation. Its a long hard road but my advise is talk to as many doctors nurses surgeons and even other parents who are in the same situation as you.Your hospital should have a Cardiac Liason officer to talk you through everything- You have to trust these people they are the experts and only they can help your daughter through this. Our son is now 2 and you wouldn't know that he went through all this- but like many people writing on this site, he is monitored each year and will have a valve replacement in his teens- the outlook is good-

    I hope your daughter receives the same love and care from your hospital as our son had- All the very best to you .

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    • Posted

      Hi Madam,

      Hows your son doiung now? my son is also undergong a total repair on his 8th month after 2 weeks and hope he overcomes this soonwas there any limiation on his activities after the surgery or any other symptoms shown afteer this surgery? will there by much pain noticed for the babies after surgery

      Thanks

       

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  • Posted

    Hi

    I hope that everything goes okay with your daughters surgery. I was also born with Fallot's. I am now 37 and had 3 surgeries as a child (2 shunts and then a complete repair when I was 7)

    After my surgery as a child I lead a reasonable healthy life. I never had the same stamina as other children but as far as school went I coped well and went onto university. I was in pretty good health until the age of 25 when my pulmanory valve needed replaced. I've struggled a bit since then and have not managed to get back to work as my health is still rather erratic. I have however, managed to have 2 children and while the pregnancies weren't the easiest I was well looked after.

    I don't know if I could say it has been a "normal" life but I have a good life and I think living with an illness like this makes you appreciate everything all the more.

    I think my advice would be to treat your daughter as normally as possible. I was wrapped in cotton wool for a lot of my childhood and missed out on a lot but in those days that is what my parents were told. There is so much more information out there on living with congenital heart disease and so much more in known now than when I was young.

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  • Posted

    HI.My son Daniel has had 2 corrective procedures done so far. He had the first one at 3 months of age at the royal childrens in melbourne, Australia. This was done early on as he kept on having tet spells (This is where he used to go quite blue and floppy and he would whimper ). If your child experiences these I would recommend you see your cardiologist sooner rather than later. Daniel was quite well after the first op >He had a full repair done and when he was 3 he had some residual muscle removed. He came through that op fine and is now 8 years old. WE only watch him in regards to bacterial infections and dental work. I would google fallots and get as much info as you can .Don't be afraid to ask questions if you have any concerns.IF you would like to chat email me on ****. Good luck .:ok:

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    • Posted

      Hows your son doiung now? my son is also undergong a total repair on his 8th month after 2 weeks and hope he overcomes this soonwas there any limiation on his activities after the surgery or any other symptoms shown afteer this surgery? will there by much pain noticed for the babies after surgery
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  • Posted

    I have had two corrections at age 6 and 30. A normal life married + daughter. It must be very scarry for parents to send their child to an op any op and especially an open heart surg. I know what my parents went throug. They kept worrying about me all their lives. From my childhood I remember a constant weeping mother. Heart op was very dangerous when I was young, at the begining of the way. Open heart surg was not available on a large scale. Nowdays it is an everyday event, a few a day, almost in every hospital in modern countrys. Go with it your daughter is lucky to be born nowdays. I do not know how old she is and her exact condition. But the only thing to do is go along with the doctorcs recomendations. Most ops succeed in a very good way. She will allways be checked, which is good, especially while pregnant, which is also good. Other from that the whole world will be open for her. She'll allways be special for you and I hope for herself. Life will have a greate meaning. Keep your spirits up and I'm here for you if you need. Pnina
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  • Posted

    My little boy was finally diagnosed with Fallots at 3 1/2 months, after months of being told his spells were 'colic'. The staff at Alder Hey Hospital were wonderful and went through everything with us, on numerous occasions as the message finally began to sink in. 5 days after diagnosis he had the surgery, and whilst the first few months after were very anxious, not only the questions 'has it worked' and 'is he ok' running through our heads, but also the day to day care, making sure his wounds were clean etc.

    Nearly 18 months on, apart from the scar, you wouldn't think there had been anything wrong with him. He spent last weekend running around with his older cousin, playing football and generally being a 2 year old.

    The road is hard and very scary, there is no denying it, but if you speak to the right people at the hospital they will be able to talk you through it and give you all the support you need. Don't be scared of asking the same questions over and over again as they understand that this is totally new and bewildering to parent and should help you every step of the way!

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  • Posted

    Hi there, I totally understand how you are feeling, it seems so unfair, why my baby, why us? Accepting it is half of the battle. You really have to put your trust in the surgeons who are so skilled and dedicated.

    The only people who will feel any pain are the parents, grandparents and extended families.

    For us the build up and actual day of the op was the worst, once the surgery is done your little baby will have drugs that will which make sure they are not in any pain at all. I believe fallots babies are so strong, and within a matter of days your baby will be out of ICU. Then your baby will keep you on your toes.

    My grandson was 10 months old when he had his op - before his op he slept a lot, cried quite a lot and did not have the energy of babies his age.

    Since his op one month ago he keeps his mum and dad run ragid with so much energy, he is happier and eats well, and has a great colour. You will get through this and look back like us and thank god for the surgeons who have fixed his heart. My thoughts are with you.

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  • Posted

    My son was also born with Tetralogy of Fallot, and it is the hardest thing to have to cope with knowing there is something wrong with your child.

    Having a baby is ment to be the best feeling ever, but when your child is taken off you and in Intensive care, its really hard to deal with. I now have post natel depression, becuase i just could not except the fact, that My baby had this awfull problem.and all i think is Why my baby??

    Jack has had lots of ECHO scans, and his weight gain is a real problem, The local hospital are awfull, and we now deal direct with Cardiff hEath hosptial, where they have all the specialist, Cardiac nurses, Cardiac wards, and they are absoulty fantastic.

    Jack is being NG tube fed, due to poor weight gain, as he was not taking much from a bottle, He has been in and out of hospital since he was born, and he is only 14 weeks old, Jack last week weighed 10lbs 2, so he is now putting weight on lovely. He was born 7lbs 9 1/2, but lost alot of weight a week old when he had colic. I am really confident everything will go well when Jack undergo's Open heart surgery, to correct everything. After speaking to other parents on the Cardiac wards, im really confident, Jack will be put in Bristol hospital for his surgery.

    Jack is such a happy child, He started smiling when he was 3 weeks old, (and NO it was not wind) Thats all he does is smile, and kick his legs, The doctors cant get over how active he is, I love my little boy to bits, and would not change him for the world, just wish he would put more weight on though, becuase he has to be 20 od lbs to undergo the surgery, He is on prescribed milk Infantrini to help with this weight gain.

    Being told though, if he has a spell it could kill him is very scary, we only found this out when Jack was 8 weeks old, So thank god, he didnt have one before or yet. But at least now, we know what to do if he does. I would like to know how The surgery has gone with other parents who baby's have tetralogy of Fallot.

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  • Posted

    Hello. I am sorry to hear about your son, Jack. I hope by now, he is alright and ready for surgery. You will be surprised how great he will become then. My daughter,Robin, now 24 and graduating from college next Spring, just had her 2nd open heart surgery last June 16th 'a day we will never forget' for a pulmonary valve replacement. At 15 months old, she had the hole in her heart fixed. she is 'now' doing great!

    Be positive and trust that God will do His work. Try to be knowledgeable about his condition and have an open communication with your doctor. Also make sure that your family has a clear understanding of what you are going through. Jack will be alright. Take good care of yourself. I'll pray for you both.

    mari

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  • Posted

    I do not know when this letter was written, but I hope her daughter is doing well. I was born in 1952 with Tetrology. Back than it practically was a death sentence but they have really advanced. I had a shunt done at 5 yrs of age and had open heart surgery at 20 yrs of age. Today, I do not think they even do the shunt anymore. Right out of the womb and I heard even in the womb they can perform open heart. I had a normal life after surgery. Even the open heart procedure had advanced. Following my open heart I had 29 good years. Unfortunately I had an aortic valve replaced when I was 49 years of age because I developed an aortic anuerysm & last year my mitral valve was repaired. Both valves were leaking & the the cause was the tetrology at birth. I do not know if your daughter of anyone else born with fallot will have similar surgeries but the open heart surgery at a young age will give them an active, normal life. I did not have an active, normal life that young kids & teens have growing up.I am not complaing nor do I want sympathy which I detest. It is what it is. For the 29 years following surgery, I was active. I never had to take any heart medication unlike following my last 2 procedures. If your daughter needs heart surgeries in the future they will have advanced that too. They already use a keyhole procedure & a cardiologist told me that in the future they can scope it and in some cases they are doing that.

    I read where genetics can cause tetrology but there is no one in our family history on both sides that ever had heart problems, so I don't know where it came from.

    Good Luck and your daughter will do just fine. Just please Do not be a protective parent not overprotective.

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  • Posted

    Hi! My name it's Yari am from Puerto Rico and my baby Fabiola was diagnosed with TF, actually she had one month old and thank god it's gaining weight well and eating well without turning blue (cianotic). I'm concern cause she is saturating 83% but not presenting symptoms of cianotic (only when she cries a lot, but I don't let her cry). The doctors will give F/U weekly until she have 2 month old to do the full reconstruction surgery. I hope my baby saturation increase!!! I'm so scare!!! I really need read or speak with others moms that pass with the same! sad I will be so grateful.

    Thanks, and sorry about my English I now it's not perfect hope you understand what am I try to explain!

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    • Posted

      Hi i dont know if this will help you, my daughter is 7mnths old and was diagnosed with tf at 8 weeks old. Her saturations were always fine, no cynotic spells, she had ohs 3 weeks ago which closed a vsd, it was the hardest thing to deal with but babies are stronger than you think. Hope all goes well.
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  • Posted

    hi, im 14 and i was born with tetralogy of fallot. If your daughter was born with tetralogy of fallot then the surgies she will have depends on what the ones you want for her at certin times in her life. if you had her get a perment heart repair then she will only need a minor surgery evry 10-15 years but if you could only get a temporary fix surgery like i did because i was only 4 months old when i started getting bad then she will need one more major sugery to repair her haert. other then the surgeries she will have a mostly normal life. i myself take my pulse every 2 hours just to make sure im alright so i would suggedt teaching her how to do that and make sure she does it. im also on 81mg's of antibiotics everyday since my 2nd surgery. but thats really all you need to know, anything else that is spacific to your daughter, your cardiologist and surgen will talk to you about. also make sure she is well edugated about her heart defect and what her limits should be.

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  • Posted

    They realized this on my son the day after he was born. We are having to monitor every 2 weeks at this point to "see" what happens. Surgery in the near future almost seems like the better option than the waiting game.

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