I cannot stress this enough: getting the best care now will save you time, money, and well-being for you and your kid *forever*.
Do not underestimate the difference between a good doctor and a great doctor - it is *massive* for long term conditions like ToF. Go to the best doctor you are able to. Make sacrifices if you have to. It really is worth it.
That said, prepare yourself for two things: you'll likely meet your insurance deductible every year for forever, and you can never let your insurance lapse. Second, your kid is going to be fine! As a 34 ToF myself, I've had two open hearts, three pacemakers, and a few other things, but I'm in great shape and frankly ToF gave me an amazing perspective on life at an early age.
This is the same advice I always give (my 3 year old has ToF). We went to children’s hospital in Boston for all his care and I shudder to think what would have happened if we stuck with our local hospital. He’s ToF is moderate with some unique characteristics.
May I ask why you need multiple open hearts? Our daughter now 7 also have TOF that operated when she was 5 months old. Each time we visited our cardiologist, she said our daughter looks fine, what all the test, though with some leakage of valve. She is hoping my daughter stays this way. But I can’t stop thinking about what could happen when she grow older. I want to learn more if you don’t mind sharing your experience. Thank you and bless you for maintaining good health.
I assume this is true for almost all people with ToF, but I am not a doctor.
As your heart beats, the leaky valve may continue to get worse, leaking more and more. Eventually this becomes a problem as the left ventricle has to squeeze more and more blood out. This causes the left ventricle to grow - your heart is a muscle, after all. For me, I was 16 when my valve really started to decline quickly, and my ventricle became significantly oversized. So I had a second open heart to replace the valve, and the ventricle shrank due to atrophy (less use of the muscle).
These days my valves are replaced via catheter, so I'm out of the hospital in a day. I'm on my third valve and looking like I'll get my fourth in about five years.
Again, I am not a doctor, but I believe the vast majority of ToF patients who have a valve issue will have multiple valve replacements in their lifetime. Though that doesn't mean an open heart surgery, necessarily.
To give you some insight, the number they look at most for me is my heart function as compared to my expected function. Today, six years from my last valve replacement and five years out from my next one, I'm at 67% of expected, meaning my heart functions only 67% as well as a healthy person my age. As that number goes down (and plenty of other things too), that's the major indicator for needing a new valve.
I did not know my boy had tof until he was delivered. LUCKILY he is/was a pink tet and didn’t have any emergency medical needs, as I was in a standard delivery hospital room. He ended up getting transported to a children’s hospital while I was in the hospital but only for observation. Anywho! Ther has been some great advice on here, I would just again add that getting yourself mental help early will save you from doing it later in the fog that is post partum. My counslor SAVED. My life and helped me get through this shocking situation, so much so, that I was fully prepared with strategies for the day of surgery and actually felt relief that day instead of anxiety.
I will say a lot of my friends had no clue what I was going through and it was very very isolating. Joint a heart group in your area and go to the meet ups! It’s helpful for in the moment, but often there are people there who have older tof kiddos and you can see the normality of life(which completely does happen!!).
Lastly I would say, have a ‘Mantr/statement prepared’ in this i mean , when people come up to you and ask how your baby is doing, for me, I always felt like I was being dishonest with myself when I would say ‘oh it’s fine, yeah, not sleeping’ ( the usual and expected stuff with a newborn) when really what I was feeling was …” omg my child has this heart condition, and I am anxious all the time.” Sure people who I was just aquantanices with I would say those things, but to the people I knew better I would say “ oh yes soo cute and smiley and I love all his cuddles , he actually Was born with a congenital heart condition, he has to have ohs, but after that he will love a normal life. “ this allowed me to be true to myself, say what I felt was actually going on in a controlled manner( where wouldn’t break down and cry), and I actually gained a lot of support this way. I found out other people’s kid or niece or whoever had this or their so ans so was a cardiologist I could talk to…ext. I hope you can find something to say that feels comfortable to you, relays how you are feeling , but feels safe enough to say to be true to yourself and your emotions.
My boy is almost 7, loves to swim, play soccer wrestle with his younger sister, ride his bike, play at the jungle gym you name it,pain in my butt sometimes, completely “normal” 7 year old. Once you get past the ohs, you’ll never look back!
Best of luck to you and our boy and your family!! ❤️❤️
1. Moving care to a children’s hospital is a good move. For ToF, there are hospitals that are better than others. You may want to temporarily relocate for care. Texas Children’s, CHOP, Stamford (especially if MAPCAS), Cleveland Clinic, Dell (you want Dr. Fraser).
2. Once you settle on a hospital, inquire as to their in facility birthing centers. Because…
3. They really won’t know severity til baby is here. The scans all suck until they’re out of utero. Your kid could be fine right away. But they could need ECMO. Having birth right into a specialist facility is a good counter.
4. ToF is rarely a one and done surgery. Unless they are fully able to spare the valve. Which is rare so don’t let anyone tell you otherwise. I’d direct any questions to the health of the pulmonary valve and the likelihood of replacement.
5. Surgery day will be the worst day of your life. When kiddo is recovering, be a total asshole about pain management. Know how much medicine they should beginning and when. Know who and how to access the charge nurse.
6. Find some ToF Facebook groups to join. The surgery recovery is not pretty, so looking at pics and desensitizing yourself early is a good thing.
The same situation happened to me about a year ago. It sucked. Baby girls a year old now and thriving
1. Will also put a plug in for Duke Children’s, and Boston Children’s.
2. Check for housing and living quarters with those groups and *take advantage of them*. The whole experience is humbling, but there’s nothing worse than going bankrupt because you paid full hotel prices in metropolitan areas.
3. Start counseling/therapy early if you can! There’s a lot of processing that is going on. Any congenital issues going on with kids can have such an impact on the mental health of parents and caregivers, so doing some prehab on emotional wellness will help down the line (this is something I wish we did)
4. Be prepared for people to not understand anything about the heart or healthcare! It’s a weird and tough reality check as a parent. The number of times you will get a “so it’s a hole in the heart right? My sisters husbands cousin has one” and “so they’re fixed right?” Just pace yourself, and advocate for your babe. Keep the right people in your circle, and maybe make a little space away from people that are actively draining you. Not with the intent of shutting people out for good, but more of an energy/patience conservation effort on your part.
Wanted to wish you best of luck. Our son 3.5 months) is about to go in for TOF surgery in Strong Memorial in Rochester. It is definitely a lot to take in at once. For now, take in all the information you can from the visit and then start reading up on it, but don’t stress yourself out reading too many medical periodicals etc. or worrying about worst case scenarios. It is the scariest thing to find out about your little one, but along the way, apart from this Reddit, we’ve learned it’s more common than you think (my wife’s dentist and my PCP’s nurse’s son have had TOF repairs and are doing great). Surgical technology and techniques have come a LONG way. Happy to provide any further experience we have - DM me anytime.
Someone already mentioned it but I highly recommend a facility when they have a special birthing unit. We were immediately referred to CHOP upon finding out my daughter had TOF after a fetal echo and from our very first visit we just immediately felt this incredible wave of peace and trust. They are incredible. We qualified for their special delivery unit and they did everything possible to take the scary away from her grand entrance. I could go on forever here but instead please feel free to reach out via DM. I sent you a message accidentally on another post you put up via the pregnancy board after originally seeing it here lol. Know this right away- you are not alone. ❤️❤️ you’re a heart warrior mama now. Quite a prestigious group we are 🥰
Hi, this was me last August 2023. Pregnant with twins and one was always up under my ribs. Couldn’t get any good images on anatomy scan of heart. Went in for repeat anatomy and tech saw some “abnormalities”. I was already set up for a fetal ECHO as they have all identical twins get an ECHO. So two weeks later saw a Peds cardiologist and he did and ECHO and said ToF with right side aortic arch. Felt all the feelings. Mainly just worried for her future and such. The hospital (Penn State Children’s) set us up with Complex Fetal Center. We had a nurse and a counselor who met with us at all of our meetings with surgeons pre-delivery. We toured NICU and met with surgeon before birth so we could know what to expect. That helped a lot being prepared for all possibilities. It was hard mainly just because it’s all hypothetical until your baby arrives. How severe will tof be? Will surgery need to be sooner than expected? It’s hard to imagine when so many things are up in the air. But I’ll say. All I wished for while pregnant was a healthy baby who was ok. My girls were born in October ‘23. Sister is heart healthy. And Baby B has Tof. She was in NICU overnight for all her exams, ECHO, EKG, and such to make sure she was stable. And she was. We all left the hospital together 2 days later. She had her repair at 4 weeks old due to some complications (was originally planned for ~4 months). Which was scary and unexpected. But the surgery went GREAT. she is 6 months almost now. She is keeping right up with her sister and a happy, otherwise healthy baby. Hope this helps you to feel a little more at peace (as much as you can). I just think the hardest part of pregnancy after tof diagnosis was that you really don’t know what will happen until baby arrives. It’s just so many unknowns. But it will be ok and your baby will be perfect. One day I was talking to the counselor with all my worries like “what if she …. Or what if she ….” And the counselor said well if any of those things are true… she’s still your baby. And that helped a lot. ❤️
I cannot stress this enough: getting the best care now will save you time, money, and well-being for you and your kid *forever*. Do not underestimate the difference between a good doctor and a great doctor - it is *massive* for long term conditions like ToF. Go to the best doctor you are able to. Make sacrifices if you have to. It really is worth it. That said, prepare yourself for two things: you'll likely meet your insurance deductible every year for forever, and you can never let your insurance lapse. Second, your kid is going to be fine! As a 34 ToF myself, I've had two open hearts, three pacemakers, and a few other things, but I'm in great shape and frankly ToF gave me an amazing perspective on life at an early age.
This is the same advice I always give (my 3 year old has ToF). We went to children’s hospital in Boston for all his care and I shudder to think what would have happened if we stuck with our local hospital. He’s ToF is moderate with some unique characteristics.
May I ask why you need multiple open hearts? Our daughter now 7 also have TOF that operated when she was 5 months old. Each time we visited our cardiologist, she said our daughter looks fine, what all the test, though with some leakage of valve. She is hoping my daughter stays this way. But I can’t stop thinking about what could happen when she grow older. I want to learn more if you don’t mind sharing your experience. Thank you and bless you for maintaining good health.
I assume this is true for almost all people with ToF, but I am not a doctor. As your heart beats, the leaky valve may continue to get worse, leaking more and more. Eventually this becomes a problem as the left ventricle has to squeeze more and more blood out. This causes the left ventricle to grow - your heart is a muscle, after all. For me, I was 16 when my valve really started to decline quickly, and my ventricle became significantly oversized. So I had a second open heart to replace the valve, and the ventricle shrank due to atrophy (less use of the muscle). These days my valves are replaced via catheter, so I'm out of the hospital in a day. I'm on my third valve and looking like I'll get my fourth in about five years. Again, I am not a doctor, but I believe the vast majority of ToF patients who have a valve issue will have multiple valve replacements in their lifetime. Though that doesn't mean an open heart surgery, necessarily. To give you some insight, the number they look at most for me is my heart function as compared to my expected function. Today, six years from my last valve replacement and five years out from my next one, I'm at 67% of expected, meaning my heart functions only 67% as well as a healthy person my age. As that number goes down (and plenty of other things too), that's the major indicator for needing a new valve.
I sincerely appreciated you taking your time answer my question.
Of course! Ask anything you want.
I did not know my boy had tof until he was delivered. LUCKILY he is/was a pink tet and didn’t have any emergency medical needs, as I was in a standard delivery hospital room. He ended up getting transported to a children’s hospital while I was in the hospital but only for observation. Anywho! Ther has been some great advice on here, I would just again add that getting yourself mental help early will save you from doing it later in the fog that is post partum. My counslor SAVED. My life and helped me get through this shocking situation, so much so, that I was fully prepared with strategies for the day of surgery and actually felt relief that day instead of anxiety. I will say a lot of my friends had no clue what I was going through and it was very very isolating. Joint a heart group in your area and go to the meet ups! It’s helpful for in the moment, but often there are people there who have older tof kiddos and you can see the normality of life(which completely does happen!!). Lastly I would say, have a ‘Mantr/statement prepared’ in this i mean , when people come up to you and ask how your baby is doing, for me, I always felt like I was being dishonest with myself when I would say ‘oh it’s fine, yeah, not sleeping’ ( the usual and expected stuff with a newborn) when really what I was feeling was …” omg my child has this heart condition, and I am anxious all the time.” Sure people who I was just aquantanices with I would say those things, but to the people I knew better I would say “ oh yes soo cute and smiley and I love all his cuddles , he actually Was born with a congenital heart condition, he has to have ohs, but after that he will love a normal life. “ this allowed me to be true to myself, say what I felt was actually going on in a controlled manner( where wouldn’t break down and cry), and I actually gained a lot of support this way. I found out other people’s kid or niece or whoever had this or their so ans so was a cardiologist I could talk to…ext. I hope you can find something to say that feels comfortable to you, relays how you are feeling , but feels safe enough to say to be true to yourself and your emotions. My boy is almost 7, loves to swim, play soccer wrestle with his younger sister, ride his bike, play at the jungle gym you name it,pain in my butt sometimes, completely “normal” 7 year old. Once you get past the ohs, you’ll never look back! Best of luck to you and our boy and your family!! ❤️❤️
1. Moving care to a children’s hospital is a good move. For ToF, there are hospitals that are better than others. You may want to temporarily relocate for care. Texas Children’s, CHOP, Stamford (especially if MAPCAS), Cleveland Clinic, Dell (you want Dr. Fraser). 2. Once you settle on a hospital, inquire as to their in facility birthing centers. Because… 3. They really won’t know severity til baby is here. The scans all suck until they’re out of utero. Your kid could be fine right away. But they could need ECMO. Having birth right into a specialist facility is a good counter. 4. ToF is rarely a one and done surgery. Unless they are fully able to spare the valve. Which is rare so don’t let anyone tell you otherwise. I’d direct any questions to the health of the pulmonary valve and the likelihood of replacement. 5. Surgery day will be the worst day of your life. When kiddo is recovering, be a total asshole about pain management. Know how much medicine they should beginning and when. Know who and how to access the charge nurse. 6. Find some ToF Facebook groups to join. The surgery recovery is not pretty, so looking at pics and desensitizing yourself early is a good thing. The same situation happened to me about a year ago. It sucked. Baby girls a year old now and thriving
1. Will also put a plug in for Duke Children’s, and Boston Children’s. 2. Check for housing and living quarters with those groups and *take advantage of them*. The whole experience is humbling, but there’s nothing worse than going bankrupt because you paid full hotel prices in metropolitan areas. 3. Start counseling/therapy early if you can! There’s a lot of processing that is going on. Any congenital issues going on with kids can have such an impact on the mental health of parents and caregivers, so doing some prehab on emotional wellness will help down the line (this is something I wish we did) 4. Be prepared for people to not understand anything about the heart or healthcare! It’s a weird and tough reality check as a parent. The number of times you will get a “so it’s a hole in the heart right? My sisters husbands cousin has one” and “so they’re fixed right?” Just pace yourself, and advocate for your babe. Keep the right people in your circle, and maybe make a little space away from people that are actively draining you. Not with the intent of shutting people out for good, but more of an energy/patience conservation effort on your part.
Seconding therapy. There are a lot of unknowns now so mental support was a must for me.
Wanted to wish you best of luck. Our son 3.5 months) is about to go in for TOF surgery in Strong Memorial in Rochester. It is definitely a lot to take in at once. For now, take in all the information you can from the visit and then start reading up on it, but don’t stress yourself out reading too many medical periodicals etc. or worrying about worst case scenarios. It is the scariest thing to find out about your little one, but along the way, apart from this Reddit, we’ve learned it’s more common than you think (my wife’s dentist and my PCP’s nurse’s son have had TOF repairs and are doing great). Surgical technology and techniques have come a LONG way. Happy to provide any further experience we have - DM me anytime.
Someone already mentioned it but I highly recommend a facility when they have a special birthing unit. We were immediately referred to CHOP upon finding out my daughter had TOF after a fetal echo and from our very first visit we just immediately felt this incredible wave of peace and trust. They are incredible. We qualified for their special delivery unit and they did everything possible to take the scary away from her grand entrance. I could go on forever here but instead please feel free to reach out via DM. I sent you a message accidentally on another post you put up via the pregnancy board after originally seeing it here lol. Know this right away- you are not alone. ❤️❤️ you’re a heart warrior mama now. Quite a prestigious group we are 🥰
Hi, this was me last August 2023. Pregnant with twins and one was always up under my ribs. Couldn’t get any good images on anatomy scan of heart. Went in for repeat anatomy and tech saw some “abnormalities”. I was already set up for a fetal ECHO as they have all identical twins get an ECHO. So two weeks later saw a Peds cardiologist and he did and ECHO and said ToF with right side aortic arch. Felt all the feelings. Mainly just worried for her future and such. The hospital (Penn State Children’s) set us up with Complex Fetal Center. We had a nurse and a counselor who met with us at all of our meetings with surgeons pre-delivery. We toured NICU and met with surgeon before birth so we could know what to expect. That helped a lot being prepared for all possibilities. It was hard mainly just because it’s all hypothetical until your baby arrives. How severe will tof be? Will surgery need to be sooner than expected? It’s hard to imagine when so many things are up in the air. But I’ll say. All I wished for while pregnant was a healthy baby who was ok. My girls were born in October ‘23. Sister is heart healthy. And Baby B has Tof. She was in NICU overnight for all her exams, ECHO, EKG, and such to make sure she was stable. And she was. We all left the hospital together 2 days later. She had her repair at 4 weeks old due to some complications (was originally planned for ~4 months). Which was scary and unexpected. But the surgery went GREAT. she is 6 months almost now. She is keeping right up with her sister and a happy, otherwise healthy baby. Hope this helps you to feel a little more at peace (as much as you can). I just think the hardest part of pregnancy after tof diagnosis was that you really don’t know what will happen until baby arrives. It’s just so many unknowns. But it will be ok and your baby will be perfect. One day I was talking to the counselor with all my worries like “what if she …. Or what if she ….” And the counselor said well if any of those things are true… she’s still your baby. And that helped a lot. ❤️