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Edited to add what to expect during your pregnancy:
Chase was diagosed at one day old, mild to moderate TOF because of a signifiagant murmur. He was scheduled for surgery at 3 month old and sent home with us the next day. He nursed and grew but had his surgery moved up to 8 weeks old because his 02's were dropping into the 70's. He was in the hospital for 9 days, and came home on a special diet (for six weeks) and lasix. After six weeks he went right back to nursing (I pumped to keep up supply) with no issues. He's never expected to have another surgery, and aside from yearly cardiology visits and a scar, he's just like every other kid. In fact, he is the most energetic kid I have EVER met. Good luck in your journey and keep us updated!
Congrats on your son! Sorry you had to find this board,
ODS (Hunter) was diagnosed a Congenital Heart Defect I was weeks pregnant as well. We learned his exact diagnosis after he was born, but we were told most likely he would have Tetralogy of Fallot or Double Outlet Right Ventricle (similar to ToF, but with the aora overriding even more) Thankfully, your tummy is the perfect environment for Joseph. Since you're breathing for him he has time to grow and get stronger and develop more. As you may know there are many variations of ToF so what happens after delivery will really depend on how he's doing. My son has ToF with Pulmonary Atresia (specifically no pulmonary valve - a more serious form of ToF). He did have to go to NICU and have a BT Shunt placed at five days old but I got to see him a second and give him a kiss before he had to go to NICU. Thankfully, we were able to bring him home when he was five days out of surgery. While ToF is pretty serious it is typically "doable". The unknown is scary and sometimes during pregnancy and the first few months of life it will feel as though all you can do is hang on, but you can do it. Hunter had a full repair at 6 1/2 months old. The goal was to get him to a year, but his heart was ready for a repair earlier than expected and again he was in the hospital for five days before being able to come home. Hunter be four years old in less than a month. The time has flown by. Yesterday, at preschool pick-up the teacher said he was smart and inquisitive. He's the fastest, loudest kid on the playground these days! He still doesnt' have a pulmonary valve, but is doing so well. need at least one more surgery in the future, but the timing will really depend on how heart continues handling the absence of pulmonary valve. Feel free to contact me if you have any questions orjust need to talk, I'm here.
My son was diagnosed 1 day after he was born. He was able to come home the same day, so he was never in the NICU. His oxygen levels never went under 90%, so he had his repair at 5 months old. He was in the hopsital for 10 days and was also sent home on lasix. He is now 21 months old and very energetic! He has no development delays and his scar is already so faint! I know it's a scary thing, but my Cardiologist also told us that it's minor compared to other defects. Whenever we feel sorry for oursevles we always try to remember that our baby was able to be fixed. There are so many defects that can never be fixed, so we are very lucky! If you ever want to talk, please do not hesitate to email me. I wish I had someone to talk to after I was told about my son's heart!
My son has TOF was not detected till 4 days after birth, he has yet to recieve is total repair OHS. The day he was diagnosed was released with me to come home. 3 months old he is thriving very well, is a happy baby you would never guess anything was wrong with him. is hard to take in as a parent believe me I did the whole research, that stuff is way too much for a parent to interpet. Take care of your little one and enjoy your pregnancie! I hope for the best for you, it will be okay!!
Hello,
Thanks,We found out a month ago at 25 weeks that our baby was diagnosed with TOF with pulmonary atresia and MAPCA's. We were originally at Northshore/LIJ in NYC but moved into a house in NJ so we switched to Columbia University Medical Center (aka Columbia Presbyterian). We were told by the pediatric cardiologist that at this point the baby will need multiple surgeries after its born.
Neonatologist: My ob wanted me to meet with one before Hunter was born. I regreted it, he wasn't helpful and was very negative. I did;however, take a tour of NICU and found that it really helped me to see what to expect as far as where my baby would be. I knew he would be in NICU and most likely your baby will atleast have a quick visit their while he is evaluated. Due to the pre-eclampsia medication I couldn't get out of bed until 24 hours after delivery and it helped me to picture him there, in his bed and safe.
They seem really organized and this week my wife has an appointment with their high risk group as well as a genetic counselor, and a sonogram. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other healthcare professional. Please review the Privacy Policy and Terms of Use before using this site.
OB: If you aren't already, you'll probably be transfered to a high risk ob and you'll see the doctor a little more often. Possibly every 2-3 weeks instead of once a month. you get furthur in your pregnancy you'll start having non-stress tests. I don't know if this is your first baby, but if so. That's where you sit or lay down and the put two belts on your tummy. One to measure any contractions you may have and one to read Joseph's heartrate. The test usually lasts about half an hour (at least it did for me) and the doctor will look at the print out to see how you're both doing. I'm not sure how often you'll do this. I did it every other week about 30 weeks or so once and then twice a week as I got closer to my due date because I developed Pre-eclampsia around 34-35 weeks. I was really pressured by my ob to do an amnio to test for genetic because a percentage of baby's with ToF have a genetic issue. I refused because treatment for the baby wouldn't change regardless of the outcome. Hunter was tested at birth and didn't have genetic issues. Most baby's with Tof don't.
However, when my OB told my husband and I what he thought it was, he also said that he leads him to believe that our odds of the baby having a chromosomal abnormality were higher. My husband and I immediately thought about the very severe abnormalities such as Downs Sydrome but I later found out that it can be caused by an abnormality that isn't severe and generally doesn't have another physical or metal symptoms on the child. other than the heart defect. Does anyone know anything about this? We won't receive the results of our amnio back for another 2 weeks. and I am looking for some hope.
I know this is an older thread, so I am not sure if anyone else is still reading these, but I was just wondering if anyone with a child that was diagnosed with a Tetralogy of Fallot knows whether or not their child has a chromosomal abnormality. I am 16 1/2wks pregnant and my baby has been tentatively diagnosed with a TOF by my OB. Unfortunately, the pediatric cardiologists in my area won't see a baby in utero to confirm the findings until 20wks.
When they told me my son had TOF at one day old, they also told me that this particular heart defect has been around for over 30 years and therefore they know what long term prognosis is and of course there are many strides in modern medicine between then and now. I can only tell you my story because they are all different.
Cardiologist: It sounds like you haven't seen the pediatric cardiologist yet. They'll do a fetal echo (ultrasound of baby's heart) and talk to you afterward. They'll probably want to do a few throughout the remainder of your pregnancy between 28 and 30 weeks it become more difficult to see the baby's heart since his ribs will be hardening and become more dense bone so don't be surprised if they don't really tell you much if you have another fetal echo after that point.
Julie and Max
PS. I know you must be terrified right now, but there is a light at the end of this tunnel.
锘?2 weeks pregnant and my baby has Tetralogy
Love, Em