First time mum, found out baby has TOF....scared of the worst. Advice please

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Hi people, I'm 31 years of age with first baby (boy) due in Feb after 11 years trying for a baby. Was just about to start ivf when we found out we were having this little one. Last week at out 20 week scan we found out about baby having tof. Had LOTS of doctors talk to me about ending the pregnancy and telling me how this baby is going to be really ill. They have really scared me into thinking I'm going to lose him either before his born or after. I want this baby more than anything in the world but don't know how to take the news. Really need people to be straight with me and be a bit positive, if anyone has advice for me that would really help. Just need friends at the minute as my bf doesn't seem to want to talk about it ūüėĒ

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  • Posted

    I don't envy your position neutral I can only advise what I myself would do smile

    I say go full term with the pregnancy and see how the baby is when it's born, TOF is not a death sentence but it's true it can be a serious condition. If the baby must pass away then it is right that he or she pass away naturally rather than by ... The baby must be given every chance of survival.

    That's my tuppence worth smile

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  • Posted

    Hi my daughter was diagnosed with this early on this year. When she was born she had a heart murmer, then 9 weeks later she had a echo scan of her heart they picked she had a vsd and pulmonry stenosis, she would need ohs when she would be around 6 mnths. On my next appointment with cardiologist they then used the term ToF, i had never heard of this before. She never had any symptoms with this i.e not feeding, turning blue, not gaining weight, she just put on weight a little slower. She had open heart surgery July this yr, everything went well, maybe when shes older she may need her pulmonry valve widened but other than that she is fine. I cant make a suggestion on what you should do as my situation was different. Hope my bit of info helped.
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  • Posted

    So you see survival and yes even a near normal life in the long term is possible, this appalling advice to ... is (as far as I'm concerned) a money saving exercise. Today alive in your womb is a good chance but out of your womb tossed away like a piece of rubbish is no chance.

    Sorry it's true neutral

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  • Posted

    Hi Kelly, I am a little surprised by this as I was a TOF baby in the 70's and had open heart surgery at about 6wks old, I thought only progress had been made in this area since.  They only found out i was TOF by about 4 weeks when i went blue. The hole in my heart wasn't big enough to be operated on but I had my pulmonary artery widened.  Now i have a heart murmur and one day will need to have my pulmonary valve replaced but I am now 39 and havent had it done yet. 

    I have lived a pretty normal life and even did a lot of exercise when i was younger (hockey, netball, aerobics etc).  I have struggled with fatigue for about the last 10 years, however my specialist does not think it is my heart as all the tests say it is coping well and I am looking for another cause. 

    You say that you have spoken to a lot of doctors but were any of these paediatric cardiologists, that operate on TOF babies?  I think I would want their opinion and theirs only.  Is it the extent of the TOF they are concerned with (as I believe these can vary) or is it just that they don't know how bad it will be?  

    I guess they are also considering everything you have already been through, if you were about to try IVF I can only imagine what you must have already gone through emotionally. If you go through with the pregnancy you certainly have a tough journey ahead for you, my mum (39 years later) still can't put into words how fearful she was when i was being opertated on.

    I think you really just have to consider whether you are prepared (or think you are able) to put yourself through all of this when there are no guarantees your baby will survive.  That said it is amazing the things they can do these days.

    If you don't think you are strong enough to put yourself through this after everything else you have been through and decide to terminate the pregnancy, please don't punish yourself for making such a decision.  People can tell you that you should go through with it, but are those same people going to be there holding your hand when your baby goes for surgery, or putting an arm around to comfort you if he doesn't make it - no.  It's too easy for people to say this is the right thing to do, but only you know what is right for you.  

    Only you know whether you can put yourself through this, not that I would look at a termination as an easy option, I know that would be devestating too, but I really would only want the opinion of the people who will have to operate on your baby if I were you, they are the ones that will know his chances best. 

    From the way you have worded your message, to be honest, it sounds like you have already made up your mind that you want to keep him, but please make sure it is your decision and not a guilt decision.

    As for being positive, if they could do open heart surgery in the 50's, 60's and 70's then there is every hope for a child being born today smile 

    I really do wish you all the best with whatever you decide and I hope you have a good support network around you x



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  • Posted

    Hi Kelly sortype to here about your news I am was in the same boat as you trying for 5 years to have a baby then was going to go down the ivf route till I managed to fall pregnant to a beautiful baby girl named ebony at my 20 weeks scan my local hospital picked something regarding ebony heart but they wanted me to be seen at another hospital for them to take a closer look that hospital couldn't see anything wrong. Later in to my pregnancy they noticed ebony had something called duodenal arterisa where she was operated on when she was a few hours old then when ebony was been checked over they noticed ebony had a heart murmur where they were referring her to a cardiologist for her to have a ech scan bit this was urgent as they weren't concerned. When ebony had her echo scan it showed she has TOF we are backwards and forwards to hospital seeing her consultant we are back there this month and ebony could be having her heart surgery either in a month or 2 months time we have nurses on stand by and have been told when ebony goes blue what me and her dad has to do lie down and bring knees to chest if that doesn't clear then ring 999 you are not alone Hun xx
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  • Posted

    Hi. Dunno how old this post is but I was born with TOF. I had open heart surgery at 4yrs old than again in my mid 30's and have had quite serious problems over the past few years. Right now I have a ICD pacemaker fitted (the one that zaps you) and I'm still experiencing serious heart problems.Throughout my life I have put my family and partner through all kinds of worry as well as being quite worried myself. I only tell you this in the spirit of being open and honest with you because witj all that said, I have had a great life. Other than the time spent in hospital I've been able to go through life hardly any differently to anyone else. Your child will unlikely be any kind of Olympic athlete but getting a little more tired than the average person when doing certain activities is the only difference your child will notice after its first surgery (which he/she will have to have). After that it will be at least 20yrs before needing any more medical help. I'm certain that my parents would pleed with you to have your baby as do I. The thought that I might not be here and lived the FULL life I've lived is unthinkable. Yes your child will spend a lot of time in hospital and you will spend a lot of nights worrying but he/she will spend far more time out of hospital, living their lives, falling in love and touching many people's lives. My parents were faced with the same decision as you and that was back in the mid 1970's. I for one am glad they chose to have me and hope you do the same.

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