Please help... need support.

Posted , 6 users are following.

We found out the day after my son was born that he has TOF. He is 2 weeks old yesterday. He has a 5.5mm hole and his valve is becoming increasingly more tightened by the day it seems. He had an echo in the hospital and another yesterday that revealed the pressure has nearly doubled in the last 2 weeks. At the moment we are in the "wait and see" phase. He goes back in another 2 weeks, 9' the 22nd for another echo. All I've been told is to watch his breathing and see if he turns blue. None of this is reassuring for me and I am having a hard time understanding why we are not talking about when to do this surgery? We know it most be done, so why are we waiting around to see how bad this gets? I just want the surgery to be done so my son can begin to lead a hopefully normal life. I am begging and reaching out for those that have been through this. What type of life can I expect for my son? How long did you have to wait before surgery? What was it like afterwards? I feel like I have not stopped crying since yesterday and I just need to find strength somewhere.

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  • Posted

    hi, my daughter was diagnosed with this after hv picking up a murmur when she was 2 days old. we got referred from then.she had a hole of 7.2 mm and a narrow pulmonary valve. she never had any symptoms i.e going blue, not feeding. only thing was that she put on weight slowly, nothing really to be concerned with though. she was/is a healthy baby doing normal things, has kept up with meeting all her milestones. she had ohs to repair hole when she was6 mnths old they weighted this long for her to get to the required weight to operate. the operation went well, she will need another op when shes in late teens/ early twenties to replace valve. she has check ups every 6 months. apart from the scare you would not think there had been anything wrong. i know all children are different but i hope this reassures you a little.
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    • Posted

      Thank you! It sounds like our situations are very similar. My boys hole is 5.5 mm and his valve is enlarged causing extra pressure in his heart. I hope we can have the same outcome as you! Does your daughter have any limitations?
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    • Posted

      Hello, this reassures me a little. My son was born with tof, we thought we had a healthy baby until his check when he was 2 days old. Was a whirlwind day of being sent through to scubu then transferred to Glasgow. Suddenly my baby was on oxygen and by the time he was a week old he had to undergo surgery to be fitted with a shunt due to a narrowed pulmonary artery. After 3 weeks we got to take him home. He is now 5 months old and on the waiting list for a full repair. Even though he has been through surgery already the next one scares me even more as it is open heart surgery. Feeding has been so difficult as he doesn't have the energy, so is on a high calorie milk to gain weight for the op. Luckily he has reached the required weight. Unfortunately just a waiting game now. It's the unknown of what he will be like after the op. It's nice to hear your daughter is doing well.

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  • Posted

    the consultants havnt really gone into depth about any limitations when shes older, dont think she will ever be an olympic athlete. shes only 2 next month so maybe when she starts school i may notice she cant run around etc as much as the other children. she is full of energy now and nothing stops her. have been told she will never be allowed to have her ears pierced, tattoos or body piercing because of the risk of getting an infection to the heart -endocarditis.

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  • Posted

    TOF is not like what it was when I had it in the 80s where it was a miracle for a newborn to survive.  TOF is well understood these days and doctors are more astute in procedures.  I would not give up hope in your child and no need to cry.  The prognosis of this defect is execellent.  I know everyone's cases are different, but I am 31 and have never needed another operation since I was 5 yrs old and can and have lived a normal life with a wife and 2 children.  I am not a doctor, but usually when they 'wait it out' or make us wait, it's a good thing, meaning he/she is stable.

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  • Posted

    I understand your concerns very well Kayla. I guess the doctors are unable to decide the kind of treatment/surgery your boy needs to undergo. Unless the exact location and severity is correctly diagnosed, they won't talk about surgery. But you are right. There is no point in delaying the surgery when the pressure has already doubled in the past 2 weeks. I think you must bring up the topic of surgery or else get a second opinion. Also, life after TOF surgery can be absolutely normal, apart from a few precautions. But the surgery needs to be done by a specialist surgeon only.

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  • Posted

    Hi Kayla,

    I'm really sorry your going through a tough time, it really is a worry. We found out my son had TOF when I was 20 weeks pregnant. When he was born his sats where quite Good and he seemed quite well.

    Like you, they told me to watch for him turning blue and look at his breathing, which terrified me and I seemed to be forever in A&E. To be honest the only time I really noticed a change of colour in my son was when he cried and it was more around the mouth area but he would turn back to his normal colour within seconds.

    Around 4 months of age we went for his check up and they were quite concerned about his sats ( the levels were very low) he was immediately put on medication and a pre op was booked in for a week later.

    Unfortunately my son became too poorly and at the pre op they transfered him straight to Intensive care and he had his full repair done the following day.

    It was all very quick the lead up to the operation and they acted fast.

    The operation itself took 9 hours and he was on the intensive care unit for 7 days ( this was due to him catching an infection) allot of the other babies where only there for 3-4 days.

    Once he was transferred to the ward we were there another week and then discharged with medication.

    The doctors tend to wait in doing the operation so the baby can put a bit of weight on, unless of course they are too poorly to wait. I know it's frustrating. I started weaning at 4 months to help the weight gain (this was advised by the hospital)

    Since the operation my son has done very well, at first I was very cautious which people expect. Winter months I find my son is poorly more, with chest infections but the doctors to tend to be over cautious and precribe antibiotics straight away.

    Life after surgery until now (his 8 years old) he is a normal little boy who plays for a local football team and for Colchester United football club, his recently been offered a trial at chelsea FC. You wouldn't think his been through so much in his little life and nothing stops him from doing what he wants to do.

    I hope this gives you some reassurance. And wishing you and your family lots of love xxx

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