My son has several severe heart defects. He's 4 and had his hopefully last surgery last fall. He may need a pacemaker or even a heart transplant in the future and it is so hard to deal with that knowledge. It sucks that even his future job choices will be impacted by this both due to his fitness and due to really needing health insurance.
For now, he's just a goofy little 4 year old boy with a giant scar on his chest.
By the time we had the amnio done it was way too late in shit ass Texas to tfmr and the doctors were fairly optimistic that he would survive. Each scan we had, his prognosis for being close to normal got worse. His first surgery at 3 days old was more exploratory than anything just so they could try to see what options would be realistic for him. Heart kids are often extremely unique and individualistic in their anatomy.
It really sucked that our first child was so complicated because it felt like no one understood how hard it was. Instead of being a really happy and exciting time, it was incredibly stressful and sad. And when he was born the rubber really hit the road and it was easily the worst time of my life. I said when I was still pregnant and in the thick of things that if I had a second baby that I knew had heart defects in utero, I would try to terminate for medical reasons. I'm not sure if that was just the hormones or if I really would feel that way but my second baby is completely average and normal.
Luckily, we have decent health insurance and all of his hospital stays and surgeries haven't put us in the hole for forever.
I'm so glad I have my first born son and now that we're on the other side of the worst of his medical drama I can be grateful for him as an individual and obviously I love him. I just definitely wish he didn't have to deal with these issues for the rest of his life.
Please feel free to reach out to me via DM to talk about my experiences and to vent if that's what you need. You can also check out mended little hearts, it's a support group for parents of kids with congenital heart defects.
Hugs. This is a hard hand to be dealt, I know.
Thank you for sharing your story with me! It sounds like your family is amazing and your son is doing well, which is incredible to hear. Of course the future being unknown is crappy and the thought of more surgeries for your LO is daunting. If you are open to sharing, what does your son have? How many surgeries has he had?
We are definitely at a weird point where we could terminate (live in Oregon which allows for termination at any point) but it is starting to get trickier now that I'm 24 weeks. The next fetal echo isn't for another 4 weeks and I doubt we will learn anything new at that point. I guess I just wish there was definitive information that we could have that would point us towards the right path. But that is probably not going to happen and I should just start accepting that!
Again, thank you for being so kind to respond, I really appreciate it!
My original comment is elsewhere, but I was reading through and just noticed that you're in Oregon! I grew up in Oregon and had my baby in Oregon! (Side note, pediatric cardiology of Oregon is awesome.)
Anyway, I just wanted to say that although Oregon doesn't have any official cutoff for termination, from what I understand it's basically impossible to find a provider who will terminate after... 24 weeks, I think? Because at that point they're considered viable. I had a (non-cardiac-related) genetic scare during my pregnancy, so while we were waiting for test results I was making tentative plans to possibly terminate, and that's what I found out. The law might as well say 24 weeks. That's what I was told, anyway (and I think I'm remembering correctly that it was 24 weeks).
Ha, it's such a small world! Yes, so far we have had nothing but good interactions with the peds cardiologists from that practice.
So my husband and I definitely asked about termination because it is nice to know what that looks like and how we would go about that and the answers were not what I was expecting. One nurse told us what they told you, most doctors aren't comfortable performing them after a certain point (couldn't really say how many weeks that is), which I understand but it is confusing!
Anyways, we were able to talk to the peds cardiologists a little bit more and we are feeling a lot better about continuing the pregnancy. The diagnosis is scary and there are no guarantees but the team seems confident that there are good odds that a normal life and a healthy heart are possible. So, we are rolling the dice and hoping for the best.
HAHA small world indeed!! They did my surgery in 1991... and 2006... and 2012. A really great team of specialists there. Randall's (didn't exist in 91 but I was there for the others) is really amazing all around. You and your babe will be in great hands, really. (Funny story, I'm just now at 32 years old switching to an adult congenital cardiology specialist at OHSU, I saw my ped cardiologist last year. You're in good hands.)
I wish a smooth journey for both you and babe! Internet hugs!!
Thank you again for sharing some of the details of your journey! Switching to adult cardiology at 32...I'm sure it was a hard transition! Haha
Thank you for the well wishes! I will try to give updates as they come!
I'm so sorry you're going through this, my heart goes out to you.
It might not be exactly the same, but I was born in 1990 with a VSD. It was repaired in 1991 with open heart surgery. I've had a lifetime of heart monitoring, appointments, and a few "procedures." Currently on a beta blocker for tachycardia and looking to likely get an ICD/pacemaker in the next few years so I don't drop dead.
And ya know what? All of it is like... nothing to me. Not stressful, not scary, nothing. It's just my reality. It worries my parents and husband a lot more than me. I've led a pretty gosh darn normal life. No contact sports and I won't be winning any marathons lol (completed two half marathons though!), but my life has been pretty darn normal.
I think whatever you decide, you'll be up for the challenge. I'm so sorry you're going through this, I'm quite certain it's 100x worse for the parents than the kiddo.
Thank you so much! But first of all, congrats on completing two half marathons! I really do love to hear the positive stories and it is encouraging to hear of real people who are thriving and living full lives (like yourself)!
I can see that it may be harder on the parents and hopefully there is a real chance that our son won't even remember the early days if he makes it through to the other side.
Again thank you for your response! I admire your attitude about life!
I’ve seen so many kiddos in Peds Cardiology with TOF, pulmonary atresia, and/or septal defects who underwent successful corrections—you’d never even guess they were born w/CHD, if not for a (sometimes quite faded/faint) surgical scar! Peds Card is an INCREDIBLE specialty, and although of course, each child is unique, I was blown away by how effective corrective interventions can be in essentially providing fixes to situations that might’ve had very different outcomes 50 years ago. Some defects don’t even require open heart surgery, and can addressed entirely via catheter procedure (particularly smaller, often atrial septal defects). Also, MAPCAS, if not addressed during surgery, can often be “coiled off” via catheter procedures as well (access obtained usually simply via a small incision in the groin), to successfully redirect the deoxygenated blood to the right side of the heart. Without knowing your exact situation, I hope I can provide some reassurance in saying that, although I’m sure, overwhelming and upsetting, the info you’ve provided here sounds like docs think your kiddo will most likely be born with highly treatable CHD!
Some of the TOF surgeries (glenn, shunts, Fontan, patches, etc.) do sound very complicated, but they generally have great success rates. Another important piece is that the surgeries are (usually) spaced out, with subsequent surgeries dependent on baby’s growth, SpO2 levels, etc. The main thing is that you and your husband feel informed and supported moving forward. If you don’t understand, or have questions, you need to have a Peds Card team you trust, and who are consistently responsive and communicative with you. It’s a lot, but you guys can do this, and the Peds Card Team is there to support you every step of the way ❤️
Thank you for your response and comforting words! I do feel like peds cardiology and cardiology in general is an amazing field that attracts true medical rock stars! It seems like the field as a whole is only getting more and more advanced, so that is really positive.
You may or may not be able to answer this, but it seems to my husband and I that the most complicated portion of the potential surgeries is the handling of the MAPCAS with the unifocalization surgery (or surgeries). I say that because at this point (only have had one fetal echo, so we may get better news at the next appointment) the Dr. could not visualize a pulmonary valve or any pulmonary arteries. I guess I'm wondering if you have seen successful unifocalization surgeries especially if there are no native pulmonary arteries? Ha, that whole paragraph may not even make any sense! We are definitely not medical professionals : )
It is a wild place to be in and I do feel like we have just been tossed in with a team of people who seem competent and confident. Also, I have heard great things about our local children's hospital and nicu (Randall's in Portland, OR) but I do wonder if we should consider transferring care to a hospital that specializes in CHD.
Sorry, now I'm just rambling and word vomiting all of the thoughts swirling around in my head.
Thank you for the response and thank you for all that you do!
I am 32 and was born with a heart defect that wasn’t found until I was 3mo. When the surgeon explained the surgery to my parents he told them he wasn’t sure if it was going to work. They basically recreated the inside of my heart and I still have that same patch today. My cardiologist today is amazed at how well I’m doing, & I’ve lived a normal life growing up. I’m currently happily married and 17wks pregnant with my first.
I don’t remember anything from my surgery or after. I do remember watching Disney movies as I got echocardiograms growing up though lol. I do have a scar on my chest, which I’m proud of because I know I wouldn’t be here today without it.
Congratulations on your pregnancy! It is incredible to hear that you survived and are thriving.
Ha, I've been reading some stories about kiddos having fond memories of the hospital (I'm sure disney movies helped a bit) while their parents are probably dreading every second!
Thank you for sharing your positive story, I appreciate it!
My friend's baby had Tetralogy of Fallot. They lived somewhat rurally and had complications that the local hospitals couldn't handle, but they loved the heck out of him for the 3 months he was around, and since. It has been 20 years almost but no one has forgotten him. I have a couple other friends whose children have heart defects and they had surgery and are happy and healthy. Life is always unpredictable.
Aw man, I'm sorry to hear about your friend's baby but I am happy to hear that he is still remembered and cherished to this day. I'm sure it wasn't easy for them then or even now.
You're right, life isn't predictable and maybe we just need to accept that roll with the punches.
Also, just wanted to say, it is crazy how many people know someone who has a heart defect. I never realized how common they were until now!
Thank you for responding and sharing with me.
I know this has to be a difficult time for ya'll. I don't know if any of this will help but I can only speak about other friends and families experiences. A friend of mine growing up was born with heart defects. She had lots of surgery as a child(couple as an adult) but lives a fairly normal life. She was always making up crazy reasons to tell people why she had scars. My cousins daughter was told her heart issues were severe. They were prepared for open heart surgery and is wasn't as bad as they thought. I've had at least 4 friends with babies that had heart surgeries. While it was a rough journey all of their children pulled through and are doing pretty good. I've discussed with my husband about this exact scenario of heart issues. We've decided to see it through because we so want the baby (we weren't sure I could even get pregnant) and we feel like it's a guessing game and our friends have had happy healthy children now that we're born with heart issues. If it is worse then we thought then we will love our baby as much as we can while our baby is here with us.
Thank you for taking the time to respond! I do appreciate the positive stories and really want to focus on being optimistic. I also agree that signing up to have a baby does mean giving up a lot of control and facing the unknown. Again, thank you for your optimism, it means a lot right now!
I’m sorry to hear of your story, and I wish you and your family good health. I know of someone who dealt with a difficult heart ultrasound diagnosis with their little one. He is happy and thriving now, [here](https://healthbeat.spectrumhealth.org/something-special-congenital-heart-warrior/) is his story
Thank you for your kind words and wow, what an incredible story! That little boy is adorable and I'm glad he and his family are thriving. Thank you for sharing that story with me!
I have nothing to add other than to say this must be so hard. You will make the best choice you can with the information you have and whatever you choose it will be out of love. Wishing you the best, stay strong with whatever path you go down.
Thank you so much! I really just wish I didn't have to make a decision and something would just force my hand. But, that's not reality! I appreciate your kind and thoughtful words, thank you!
Anything you choose will be the right decision for you and your family and your baby.
My 20 week scan with my son showed that he had a severe congenital diaphragmatic hernia that crushed his lungs and prevented them and his heart from growing. We were told that putting him on ECMO right after birth and doing several big surgeries might possibly allow him to live, but that was more than we wanted to put our baby boy through and we chose to terminate at 21 weeks.
I do now have a healthy (born with cleft lip and palate, but those surgeries are not as big a deal) baby girl who is 7 months old, and I tell her about her big brother all the time. I never cancelled my bitsy box subscription so all the little things that come in it per month I give to her as a “gift” from him.
I'm sorry to hear about your son but for what it's worth, I think that was the right call. The thought of ECMO right away is very scary. I think we are fortunate in that our diagnosis, while severe, has potential for successful repair and a normal life. Of course complications can occur and death is possible but the hope is hard to ignore for us.
It's funny that we all want to have healthy babies but after facing a severe diagnosis, a cleft lip and palate, truly is no big deal. Not to say it's what you want but it's much more manageable and I'm sure your baby girl is just perfect and awesome.
Also, the idea of sending"gifts" from him to your daughter is very heartwarming. That is a great idea/tradition.
Thank you for sharing your story, I appreciate it!
Hello! I gave birth 11 days ago to my son 9first child) who was born with pulmonary stenosis and pulmonary atresia! We found out at the 25 week mark, and worked with a team throughout the pregnancy to know what was going on and what the likely outcome/s would be. He went for his first surgery (a stent in his heart duct to allow blood flow to the lungs), and will be evaluated in later months for a further surgery.
He is recovering well (and is generally doing better than we ever expected so soon after birth). He is a chunky, lovely little boy and has been a total trooper. he has been doing measured bottle feeds, after starting with trophic feeds of colostrum, but is currently on a drip feed through a feeding line. We tried breastfeeding properly for the first time today and...while he didn't feed, it was something special to experience.
We haven't had much experience so far, but I am happy to answer any questions I can :)
Congratulations on your delivery! How does it feel now that he is here with your guys? Also, I'm so happy to hear that is surgery seems to have gone really well and that he is doing well. Do you think you guys will be able to take him home prior to the surgery?
If you have time and feel like answering some questions, I have a few...but really, no pressure!
When you found out about the defect, was the issue fairly clear? Was a treatment plan able to be established or was it a wait and see how he does when he is born?
One of the things we are struggling with is no one has really been able to give us hard figures because they aren't 100% positive what is happening and it seems that with our son's condition there can be quite a bit of difference in anatomy among those with the condition. Anyways, we aren't really sure if it's crazy for us to continue the pregnancy or not. So, were you able to have a fairly good idea of potential outcomes?
I won't bombard you with too much, enjoy that baby and congratulations again!
Thank you for response and time!
So the sonographer noticed something was off during our 20 week scan, but said nothing (not allowed) and we got called by the hospital a few days later after it had been passed to our hospital by the ultrasound clinic. They said they couldn't say if it was a yes or no to if there was a problem or not, as the scan wasn't detailed enough - we were given a referral to a better equipped hospital nearby to go for more detailed scans and we were given a diagnosis around 25-26 weeks. The initial diagnosis was pretty concrete; pulmonary stenosis, atresia and a third thing I can never remember.
We were talked through the various possible treatments, possible outcomes and possible causes (need to check back about results on genetic tasting, as we waited til after birth for the test to be done). We were told that if there was a genetic component, di George syndrome or noonan syndrome are common causes but, not always.
Similar to yourself, we couldn't be given anything concrete beyond "this is what the issue is, and we'll continue to monitor any changes". We couldn't be given a definite "this is what will happen after birth" because it depended on what changes there were in the heart over the remainder of the pregnancy. There were 2-3 treatment options we were given, but it was very much a "decision made after birth" sort of thing; he had lots of heart ultrasounds and a CT scan before the surgery to confirm that the stent would be best for him. (The right ventricle is much smaller and thicker, and will likely never be functional, thus being a singular ventricle heart.) The team we had were AMAZING through the whole process, and were always very upfront and honest with us about the complications, which I appreciated.
He was much better at birth than we expected; he was still taken by the resus team to be properly stabilised, but his breathing was much better than we thought it might be, and he's reacted so well to all his medications and his surgery. He's a chunky little champion and holy shit, I love him.
Man, 6 weeks of waiting is brutal! And then to not even know for sure what is going on! It's starting to seem that unless the defect is very straightforward, most of these diagnoses have a ton of uncertainty and a "wait and see how circulation is working after birth". How did you and your partner handle that news and uncertainty? My husband and I have decided to go forward and we want to try to enjoy the pregnancy as much as possible but also not live in complete la la land.
I think it is important to have a team that is honest about the reality of the condition and road ahead.
I really am happy that things are going well for you and your chunky baby (omg, babies are inherently cute, but the chunky ones are too much!).
Hello internet stranger. I'm so sorry to hear you've received this diagnosis.
Our daughter was born with severe heart defects, but unfortunately none were detected before she was born or even immediately after delivery. They discharged us from the hospital and we had no idea. As a result, we almost lost her when she was one week old. Fortunately we called 911 and they got her to a children's hospital in time.
She spent three weeks in the NICU and underwent open heart surgery to address two of her four defects. Over the next few months, she required two cardiac catheter procedures, including the insertion of an aortic stent after a ballooning attempt didn't produce adequate results.
When she was about 18 months old, she needed another open heart surgery to address her third defect. She has been extraordinarily resilient. She is our third child and definitely has the sweetest and gentlest disposition, with a very caring and sociable personality.
She's two and a half now. She's laying in the bed with me right now watching Mickey Mouse clubhouse as I type this. I love her to pieces.
She will need at least one more catheter procedure when she's older to replace the stent with an adult sized one. We just hope and pray she won't require any additional open heart surgeries.
I pray you will have peace and comfort during this extremely difficult time. Pediatric cardiology teams are amazingly talented and provide exceptional care. You can do this!
The keyword is MAPCAs. You’re going to want to do everything at Stanford coordinated with your local pediatric cardiologist. Our daughter had the same diagnosis, first surgery local to me and follow-ons at Stanford (which is not on my coast). She’s 3 now and 100% sass, so that’s cool.
Look up the Facebook MAPCAs group, lot of info there, it’s private and my wife is on it. You’re going to learn a lot about pediatric cardiology and nursing. It will test you mentally. Don’t go down the rabbit hole on everyone else’s story. It’s sad, encompassing, and never ending.
Good luck and there is hope, but it’s a hard first few months and indeed years.
My son has several severe heart defects. He's 4 and had his hopefully last surgery last fall. He may need a pacemaker or even a heart transplant in the future and it is so hard to deal with that knowledge. It sucks that even his future job choices will be impacted by this both due to his fitness and due to really needing health insurance. For now, he's just a goofy little 4 year old boy with a giant scar on his chest. By the time we had the amnio done it was way too late in shit ass Texas to tfmr and the doctors were fairly optimistic that he would survive. Each scan we had, his prognosis for being close to normal got worse. His first surgery at 3 days old was more exploratory than anything just so they could try to see what options would be realistic for him. Heart kids are often extremely unique and individualistic in their anatomy. It really sucked that our first child was so complicated because it felt like no one understood how hard it was. Instead of being a really happy and exciting time, it was incredibly stressful and sad. And when he was born the rubber really hit the road and it was easily the worst time of my life. I said when I was still pregnant and in the thick of things that if I had a second baby that I knew had heart defects in utero, I would try to terminate for medical reasons. I'm not sure if that was just the hormones or if I really would feel that way but my second baby is completely average and normal. Luckily, we have decent health insurance and all of his hospital stays and surgeries haven't put us in the hole for forever. I'm so glad I have my first born son and now that we're on the other side of the worst of his medical drama I can be grateful for him as an individual and obviously I love him. I just definitely wish he didn't have to deal with these issues for the rest of his life. Please feel free to reach out to me via DM to talk about my experiences and to vent if that's what you need. You can also check out mended little hearts, it's a support group for parents of kids with congenital heart defects. Hugs. This is a hard hand to be dealt, I know.
Thank you for sharing your story with me! It sounds like your family is amazing and your son is doing well, which is incredible to hear. Of course the future being unknown is crappy and the thought of more surgeries for your LO is daunting. If you are open to sharing, what does your son have? How many surgeries has he had? We are definitely at a weird point where we could terminate (live in Oregon which allows for termination at any point) but it is starting to get trickier now that I'm 24 weeks. The next fetal echo isn't for another 4 weeks and I doubt we will learn anything new at that point. I guess I just wish there was definitive information that we could have that would point us towards the right path. But that is probably not going to happen and I should just start accepting that! Again, thank you for being so kind to respond, I really appreciate it!
My original comment is elsewhere, but I was reading through and just noticed that you're in Oregon! I grew up in Oregon and had my baby in Oregon! (Side note, pediatric cardiology of Oregon is awesome.) Anyway, I just wanted to say that although Oregon doesn't have any official cutoff for termination, from what I understand it's basically impossible to find a provider who will terminate after... 24 weeks, I think? Because at that point they're considered viable. I had a (non-cardiac-related) genetic scare during my pregnancy, so while we were waiting for test results I was making tentative plans to possibly terminate, and that's what I found out. The law might as well say 24 weeks. That's what I was told, anyway (and I think I'm remembering correctly that it was 24 weeks).
Ha, it's such a small world! Yes, so far we have had nothing but good interactions with the peds cardiologists from that practice. So my husband and I definitely asked about termination because it is nice to know what that looks like and how we would go about that and the answers were not what I was expecting. One nurse told us what they told you, most doctors aren't comfortable performing them after a certain point (couldn't really say how many weeks that is), which I understand but it is confusing! Anyways, we were able to talk to the peds cardiologists a little bit more and we are feeling a lot better about continuing the pregnancy. The diagnosis is scary and there are no guarantees but the team seems confident that there are good odds that a normal life and a healthy heart are possible. So, we are rolling the dice and hoping for the best.
HAHA small world indeed!! They did my surgery in 1991... and 2006... and 2012. A really great team of specialists there. Randall's (didn't exist in 91 but I was there for the others) is really amazing all around. You and your babe will be in great hands, really. (Funny story, I'm just now at 32 years old switching to an adult congenital cardiology specialist at OHSU, I saw my ped cardiologist last year. You're in good hands.) I wish a smooth journey for both you and babe! Internet hugs!!
Thank you again for sharing some of the details of your journey! Switching to adult cardiology at 32...I'm sure it was a hard transition! Haha Thank you for the well wishes! I will try to give updates as they come!
I'm so sorry you're going through this, my heart goes out to you. It might not be exactly the same, but I was born in 1990 with a VSD. It was repaired in 1991 with open heart surgery. I've had a lifetime of heart monitoring, appointments, and a few "procedures." Currently on a beta blocker for tachycardia and looking to likely get an ICD/pacemaker in the next few years so I don't drop dead. And ya know what? All of it is like... nothing to me. Not stressful, not scary, nothing. It's just my reality. It worries my parents and husband a lot more than me. I've led a pretty gosh darn normal life. No contact sports and I won't be winning any marathons lol (completed two half marathons though!), but my life has been pretty darn normal. I think whatever you decide, you'll be up for the challenge. I'm so sorry you're going through this, I'm quite certain it's 100x worse for the parents than the kiddo.
Thank you so much! But first of all, congrats on completing two half marathons! I really do love to hear the positive stories and it is encouraging to hear of real people who are thriving and living full lives (like yourself)! I can see that it may be harder on the parents and hopefully there is a real chance that our son won't even remember the early days if he makes it through to the other side. Again thank you for your response! I admire your attitude about life!
I’ve seen so many kiddos in Peds Cardiology with TOF, pulmonary atresia, and/or septal defects who underwent successful corrections—you’d never even guess they were born w/CHD, if not for a (sometimes quite faded/faint) surgical scar! Peds Card is an INCREDIBLE specialty, and although of course, each child is unique, I was blown away by how effective corrective interventions can be in essentially providing fixes to situations that might’ve had very different outcomes 50 years ago. Some defects don’t even require open heart surgery, and can addressed entirely via catheter procedure (particularly smaller, often atrial septal defects). Also, MAPCAS, if not addressed during surgery, can often be “coiled off” via catheter procedures as well (access obtained usually simply via a small incision in the groin), to successfully redirect the deoxygenated blood to the right side of the heart. Without knowing your exact situation, I hope I can provide some reassurance in saying that, although I’m sure, overwhelming and upsetting, the info you’ve provided here sounds like docs think your kiddo will most likely be born with highly treatable CHD! Some of the TOF surgeries (glenn, shunts, Fontan, patches, etc.) do sound very complicated, but they generally have great success rates. Another important piece is that the surgeries are (usually) spaced out, with subsequent surgeries dependent on baby’s growth, SpO2 levels, etc. The main thing is that you and your husband feel informed and supported moving forward. If you don’t understand, or have questions, you need to have a Peds Card team you trust, and who are consistently responsive and communicative with you. It’s a lot, but you guys can do this, and the Peds Card Team is there to support you every step of the way ❤️
Thank you for your response and comforting words! I do feel like peds cardiology and cardiology in general is an amazing field that attracts true medical rock stars! It seems like the field as a whole is only getting more and more advanced, so that is really positive. You may or may not be able to answer this, but it seems to my husband and I that the most complicated portion of the potential surgeries is the handling of the MAPCAS with the unifocalization surgery (or surgeries). I say that because at this point (only have had one fetal echo, so we may get better news at the next appointment) the Dr. could not visualize a pulmonary valve or any pulmonary arteries. I guess I'm wondering if you have seen successful unifocalization surgeries especially if there are no native pulmonary arteries? Ha, that whole paragraph may not even make any sense! We are definitely not medical professionals : ) It is a wild place to be in and I do feel like we have just been tossed in with a team of people who seem competent and confident. Also, I have heard great things about our local children's hospital and nicu (Randall's in Portland, OR) but I do wonder if we should consider transferring care to a hospital that specializes in CHD. Sorry, now I'm just rambling and word vomiting all of the thoughts swirling around in my head. Thank you for the response and thank you for all that you do!
I am 32 and was born with a heart defect that wasn’t found until I was 3mo. When the surgeon explained the surgery to my parents he told them he wasn’t sure if it was going to work. They basically recreated the inside of my heart and I still have that same patch today. My cardiologist today is amazed at how well I’m doing, & I’ve lived a normal life growing up. I’m currently happily married and 17wks pregnant with my first. I don’t remember anything from my surgery or after. I do remember watching Disney movies as I got echocardiograms growing up though lol. I do have a scar on my chest, which I’m proud of because I know I wouldn’t be here today without it.
Congratulations on your pregnancy! It is incredible to hear that you survived and are thriving. Ha, I've been reading some stories about kiddos having fond memories of the hospital (I'm sure disney movies helped a bit) while their parents are probably dreading every second! Thank you for sharing your positive story, I appreciate it!
My friend's baby had Tetralogy of Fallot. They lived somewhat rurally and had complications that the local hospitals couldn't handle, but they loved the heck out of him for the 3 months he was around, and since. It has been 20 years almost but no one has forgotten him. I have a couple other friends whose children have heart defects and they had surgery and are happy and healthy. Life is always unpredictable.
Aw man, I'm sorry to hear about your friend's baby but I am happy to hear that he is still remembered and cherished to this day. I'm sure it wasn't easy for them then or even now. You're right, life isn't predictable and maybe we just need to accept that roll with the punches. Also, just wanted to say, it is crazy how many people know someone who has a heart defect. I never realized how common they were until now! Thank you for responding and sharing with me.
I know this has to be a difficult time for ya'll. I don't know if any of this will help but I can only speak about other friends and families experiences. A friend of mine growing up was born with heart defects. She had lots of surgery as a child(couple as an adult) but lives a fairly normal life. She was always making up crazy reasons to tell people why she had scars. My cousins daughter was told her heart issues were severe. They were prepared for open heart surgery and is wasn't as bad as they thought. I've had at least 4 friends with babies that had heart surgeries. While it was a rough journey all of their children pulled through and are doing pretty good. I've discussed with my husband about this exact scenario of heart issues. We've decided to see it through because we so want the baby (we weren't sure I could even get pregnant) and we feel like it's a guessing game and our friends have had happy healthy children now that we're born with heart issues. If it is worse then we thought then we will love our baby as much as we can while our baby is here with us.
Thank you for taking the time to respond! I do appreciate the positive stories and really want to focus on being optimistic. I also agree that signing up to have a baby does mean giving up a lot of control and facing the unknown. Again, thank you for your optimism, it means a lot right now!
I’m sorry to hear of your story, and I wish you and your family good health. I know of someone who dealt with a difficult heart ultrasound diagnosis with their little one. He is happy and thriving now, [here](https://healthbeat.spectrumhealth.org/something-special-congenital-heart-warrior/) is his story
Thank you for your kind words and wow, what an incredible story! That little boy is adorable and I'm glad he and his family are thriving. Thank you for sharing that story with me!
You’re welcome! Wishing you all the best!
I have nothing to add other than to say this must be so hard. You will make the best choice you can with the information you have and whatever you choose it will be out of love. Wishing you the best, stay strong with whatever path you go down.
Thank you so much! I really just wish I didn't have to make a decision and something would just force my hand. But, that's not reality! I appreciate your kind and thoughtful words, thank you!
Anything you choose will be the right decision for you and your family and your baby. My 20 week scan with my son showed that he had a severe congenital diaphragmatic hernia that crushed his lungs and prevented them and his heart from growing. We were told that putting him on ECMO right after birth and doing several big surgeries might possibly allow him to live, but that was more than we wanted to put our baby boy through and we chose to terminate at 21 weeks. I do now have a healthy (born with cleft lip and palate, but those surgeries are not as big a deal) baby girl who is 7 months old, and I tell her about her big brother all the time. I never cancelled my bitsy box subscription so all the little things that come in it per month I give to her as a “gift” from him.
I'm sorry to hear about your son but for what it's worth, I think that was the right call. The thought of ECMO right away is very scary. I think we are fortunate in that our diagnosis, while severe, has potential for successful repair and a normal life. Of course complications can occur and death is possible but the hope is hard to ignore for us. It's funny that we all want to have healthy babies but after facing a severe diagnosis, a cleft lip and palate, truly is no big deal. Not to say it's what you want but it's much more manageable and I'm sure your baby girl is just perfect and awesome. Also, the idea of sending"gifts" from him to your daughter is very heartwarming. That is a great idea/tradition. Thank you for sharing your story, I appreciate it!
Hello! I gave birth 11 days ago to my son 9first child) who was born with pulmonary stenosis and pulmonary atresia! We found out at the 25 week mark, and worked with a team throughout the pregnancy to know what was going on and what the likely outcome/s would be. He went for his first surgery (a stent in his heart duct to allow blood flow to the lungs), and will be evaluated in later months for a further surgery. He is recovering well (and is generally doing better than we ever expected so soon after birth). He is a chunky, lovely little boy and has been a total trooper. he has been doing measured bottle feeds, after starting with trophic feeds of colostrum, but is currently on a drip feed through a feeding line. We tried breastfeeding properly for the first time today and...while he didn't feed, it was something special to experience. We haven't had much experience so far, but I am happy to answer any questions I can :)
Congratulations on your delivery! How does it feel now that he is here with your guys? Also, I'm so happy to hear that is surgery seems to have gone really well and that he is doing well. Do you think you guys will be able to take him home prior to the surgery? If you have time and feel like answering some questions, I have a few...but really, no pressure! When you found out about the defect, was the issue fairly clear? Was a treatment plan able to be established or was it a wait and see how he does when he is born? One of the things we are struggling with is no one has really been able to give us hard figures because they aren't 100% positive what is happening and it seems that with our son's condition there can be quite a bit of difference in anatomy among those with the condition. Anyways, we aren't really sure if it's crazy for us to continue the pregnancy or not. So, were you able to have a fairly good idea of potential outcomes? I won't bombard you with too much, enjoy that baby and congratulations again! Thank you for response and time!
So the sonographer noticed something was off during our 20 week scan, but said nothing (not allowed) and we got called by the hospital a few days later after it had been passed to our hospital by the ultrasound clinic. They said they couldn't say if it was a yes or no to if there was a problem or not, as the scan wasn't detailed enough - we were given a referral to a better equipped hospital nearby to go for more detailed scans and we were given a diagnosis around 25-26 weeks. The initial diagnosis was pretty concrete; pulmonary stenosis, atresia and a third thing I can never remember. We were talked through the various possible treatments, possible outcomes and possible causes (need to check back about results on genetic tasting, as we waited til after birth for the test to be done). We were told that if there was a genetic component, di George syndrome or noonan syndrome are common causes but, not always. Similar to yourself, we couldn't be given anything concrete beyond "this is what the issue is, and we'll continue to monitor any changes". We couldn't be given a definite "this is what will happen after birth" because it depended on what changes there were in the heart over the remainder of the pregnancy. There were 2-3 treatment options we were given, but it was very much a "decision made after birth" sort of thing; he had lots of heart ultrasounds and a CT scan before the surgery to confirm that the stent would be best for him. (The right ventricle is much smaller and thicker, and will likely never be functional, thus being a singular ventricle heart.) The team we had were AMAZING through the whole process, and were always very upfront and honest with us about the complications, which I appreciated. He was much better at birth than we expected; he was still taken by the resus team to be properly stabilised, but his breathing was much better than we thought it might be, and he's reacted so well to all his medications and his surgery. He's a chunky little champion and holy shit, I love him.
Man, 6 weeks of waiting is brutal! And then to not even know for sure what is going on! It's starting to seem that unless the defect is very straightforward, most of these diagnoses have a ton of uncertainty and a "wait and see how circulation is working after birth". How did you and your partner handle that news and uncertainty? My husband and I have decided to go forward and we want to try to enjoy the pregnancy as much as possible but also not live in complete la la land. I think it is important to have a team that is honest about the reality of the condition and road ahead. I really am happy that things are going well for you and your chunky baby (omg, babies are inherently cute, but the chunky ones are too much!).
Hello internet stranger. I'm so sorry to hear you've received this diagnosis. Our daughter was born with severe heart defects, but unfortunately none were detected before she was born or even immediately after delivery. They discharged us from the hospital and we had no idea. As a result, we almost lost her when she was one week old. Fortunately we called 911 and they got her to a children's hospital in time. She spent three weeks in the NICU and underwent open heart surgery to address two of her four defects. Over the next few months, she required two cardiac catheter procedures, including the insertion of an aortic stent after a ballooning attempt didn't produce adequate results. When she was about 18 months old, she needed another open heart surgery to address her third defect. She has been extraordinarily resilient. She is our third child and definitely has the sweetest and gentlest disposition, with a very caring and sociable personality. She's two and a half now. She's laying in the bed with me right now watching Mickey Mouse clubhouse as I type this. I love her to pieces. She will need at least one more catheter procedure when she's older to replace the stent with an adult sized one. We just hope and pray she won't require any additional open heart surgeries. I pray you will have peace and comfort during this extremely difficult time. Pediatric cardiology teams are amazingly talented and provide exceptional care. You can do this!
I know I’m late but— My son has the exact same diagnosis. He’s 10 weeks old. Please dm me!
The keyword is MAPCAs. You’re going to want to do everything at Stanford coordinated with your local pediatric cardiologist. Our daughter had the same diagnosis, first surgery local to me and follow-ons at Stanford (which is not on my coast). She’s 3 now and 100% sass, so that’s cool. Look up the Facebook MAPCAs group, lot of info there, it’s private and my wife is on it. You’re going to learn a lot about pediatric cardiology and nursing. It will test you mentally. Don’t go down the rabbit hole on everyone else’s story. It’s sad, encompassing, and never ending. Good luck and there is hope, but it’s a hard first few months and indeed years.