For sanity, I took a day away from Dr. Google and everything online related to congenital heart defects. Today, I come back to even more support and encouragement. You all are the best!
If our son does indeed have Tetralogy of Fallot, without any additional conditions or defects, it looks like there is a WIDE range of severity. Shaun White has it, and he's won Olympic gold medals. Other babies born with it die within a month, often from complications related to surgery. The mortality rate is ~3%. And unfortunately, it always requires a few open-heart surgeries.
We'll get a firm diagnosis at our appointment on March 15. The wait is excruciating. I swing back and forth between despair and optimism. I am afraid to continue working on the nursery. I am afraid of becoming more attached to him, and then losing him.
@msuzannah Your brother is a huge inspiration--and completely adorable! If we get a positive diagnosis, we are hoping for an outcome just like his. I read a bit about hypoplastic heart conditions on a zipper club blog, and WOW. WOW. He must be a very strong little fighter! How much time did your parents spend at the hospital during his first year? We're trying to get an idea of what our new normal might be like. I'll contact our hospital and ask about a parents' group, too. They'll probably be able to tell us a lot about that, as well.
His first year he had 2 surgeries and I think the first year was a grand total of 38 days between the 2. The 2nd surgery he stayed the longest because it was a big surgery and he ended up getting an infection but he pulled through!! Like I said in my earlier post the first year was hell. It was awful to try to get through between the waiting and the constant ups and downs and just making it to the next milestone. but somehow it happens! I'm sorry you are stuck in the unsure waiting time right now. It's hard to not know what is going to happen and what to expect especially when it is such a life changing thing. It constantly felt like we had to adjust to things and we just started calling it "the new normal". My mom always jokes that life never lets you get too comfortable because as soon as you do it will throw something else in the way! I wish that I could say the emotional roller coaster goes away but in 5 1/2 years it's still there all the time. Now it at least doesn't give us whiplash but it's still quite the ride! Just remember that this is not your fault. There is nothing that could be changed to make this different. Things happen in life and that's the way it goes. When we become pregnant those little cells are splitting so fast it's a miracle in of itself that most of us end up normal. Your baby might have a heart defect but that does not mean that he is somehow unable to live a wonderful life. Sure it could mean there are limitations on some of the things that they want to do (my brother probably won't be the most athletic guy in the world but that doesn't stop him from playing at recess and playing tball and chasing everyone around the yard) but limitations do not take away from the quality of life in this case. The fact that you are concerned and that you are looking for ways to help him prove that you are going to be a fabulous mom! You are now able to be the voice for this baby in advocating what is best for him and standing up for his needs when he can't do it. One of the best things you can do at this point is love him unconditionally and love yourself as well. You CAN do this! It's ok to cry and feel lost and upset but at the end of the day you are strong because you are still going!! I'll be sending you positive thoughts and prayers especially for your next appointment! Keep us updated on how you and baby are doing!!
I'm so sorry, we have a congenital heart defect in the family and in 4 weeks we will do a fetal echocardiogram. They don't usually do them until 22-24weeks here. My brothers went undiagnosed and it caused other issues. I know it's so scary but it's great they caught it do it can be corrected. ((Hugs))
@PleaseSendPicklesNowI'm late to the discussion but I also wanted to add that my brother was born with a congenital heart defect. He had transposition of the major vessels, different from what you are discussing, but similar end results. He was born in 1995 and my parents had no clue at his birth that anything was wrong. Thankfully some keen nurses noticed his color was off and after a quick evaluation a peditrician heart specialist discovered what was wrong. TWENTY years ago he was air-med-evacced to NYC where open-heart surgery was performed on him when he was less than a week old. Modern medicine is a miracle and they were able to fix his defect.
Because of the family history, we have a level II U/S/echocardiogram every pregnancy (ours is scheduled for 25 weeks this pregnancy). We elect to do it so that we have personnel on stand-by at delivery in the event of an issue arising. The GREAT news here is that they have discovered it early! IF it doesn't resolve, then a medical team can be standing by at delivery, reducing risks. Prayers for you and your family as you go through this!
DS: EDD, December 19th, 2014. Born, December 19th, 2014! DD: EDD, July 18th, 2016. Born, July 19th, 2016!
@PleaseSendPicklesNow normally just a lurker but i thought i would speak up. My husband has Tetralogy of Fallot; he was airlifted to Children's in Seattle right after being born for his 1st surgery. He wasn't diagnosed during an ultrasound so it was quite stressful for his parents to have all this hit them in the delivery room. Talking about the past it sounded like the only thing he didn't do was football; he still played basketball but just for fun. He is now 6'6" 240lbs so it didn't hold back his growing. Also, we've seen a geneticist and he's no more statistically likely to pass a heart condition on to our children than the statistical average is. The only thing he says he regrets is not charging doctors and nurses a $1 for every time they listened to his heart....swears he'd be a millionaire. If you ever have questions i would be happy to pass them along to him and his parents.
@PleaseSendPicklesNow I can relate to you!!!!! I'm sending positive mommy vibes your way!!!!!! Hope all turns out okay.
I had my a/s today and was surprised to did out that I'm having a boy! I was on cloud nine til the tech brought the doc in. He told me that my baby may have VSD and I have to go to the children's hospital for a more detailed u/s on the heart. He said best case scenario, it fixes itself with time, worst case scenario, baby would need surgery after birth. The tech said they usually do the scan at 24 weeks (I'm 20.5) but I got a phone call 10 mins later scheduling me for next Monday. Made me nervous they're getting me in soon. But I can totally understand it being hard to wait!!!! The tech told me they usually wait a few weeks so the heart is develope a bit more and they can tell for sure what's going on. So maybe that's why you have to wait.
anyway, I'm trying to tell myself to not worry until I know anything definite but easier said than done! I hope you're able to stay as calm as possible (again easier said than done). I feel for your situation and feel free to PM me if you want.
You guys! You are amazing. I've been keeping myself sane by strictly avoiding heart related stuff online. Even this thread. I had to step back for a day or two, or I'd go nuts. But I just read everything that's been said since I last checked in, and I'm literally crying from all the gratitude I feel for your support. Or maybe it's the pregnancy hormones? I feel so encouraged, so hopeful--and I don't feel alone anymore.
@ladythrice, good luck to you at your upcoming echocardiogram. Do you know if/when your brother needed follow up surgeries later in childhood, or in young adulthood? I am sort of in awe of the nurses who noticed that his color was off. It's so lucky they caught it when they did.
@callen10210 Thank for coming out of lurkdom, because your husband's story is so encouraging. I even read it to my own husband. It makes us both so happy that if our son is diagnosed with ToF, we can still expect a happy and normal life for him after surgery. We don't care if he's not a big athlete. Cuz if he takes after me, he won't be athletic...heart defect or not! Do you know if/when yr husband needed later surgeries? Or was he one and done after the first?
@austinjl It's a BOY!! Congratulations! But I'm so sorry you got bad news today. This thread is for you, too. And for anyone else who is concerned about their baby's heart. As scary as it is, it sounds like the prognosis can be really good. I'll be thinking about you and your little guy.
@msuzannah You don't know how much you've done to help me, or how many times I've thought about your kind words over the last two days. I am so grateful that you took the time to bolster my spirits when I was at my lowest. I hope you have an amazing day tomorrow and find a $100 bill on the sidewalk. And get treated to a surprise prenatal massage. You deserve it.
So the bad news came last week at a random Zika test appointment. Our anatomy scan is tomorrow. The diagnosis has to come from pediatric cardiology in a few weeks, not from the anatomy scan. But I hope we can learn something new and good tomorrow. Wish us luck!
(Okay, the vomit of rainbows-and-sunshine is over, haha. Carry on with the humor and snark. )
@PleaseSendPicklesNow He's had 3 open heart surgeries. 1st was at 3 days old, 2nd was at 5 yrs old, 3rd in the teen years....the porcine valves usually last about 10 to 15 years but i think that's once you stop growing. At his last echo his valves were only slightly leaking so no 4th yet; we're hoping that a new drug they're working on to replace Coumadin (i think?) will be available by then and he'll just get a mechanical valve and be done with these surgeries.
@callen10210 Wow, 3 surgeries so far! I am very curious how the technology might improve in the next few years. Mechanical valves? Maybe even doing the procedure by cardiac catheter instead of open heart? I really, really hope! Your comment about medication made me realize I hadn't yet considered what meeicines our son might need. Does your husband take medicine all the time? Or is the drug you mentioned only used around surgery time?
For anyone who's wondering, yesterday ended up being a disappointment: The doc cancelled my 20 week ultrasound because the one we're doing next week with the cardiac specialist makes it redundant. I get it, and I'm glad we won't have to pay for an unneccessary ultrasound, but I really wanted to see the baby.
I just wanted to send love and well wishes. My best friend is a pediatric nurse in the cardiac ICU of Children's Hospital of Philadelphia. The care that children receive is so outstanding these days and there are more improvements coming every day.
@PleaseSendPicklesNow his surgeon told him his next surgery would be with a cardiac catheter. He didn't take meds except after surgery. The coumadin is used for mechanical valves. He's 31 yrs old and now takes a blood pressure med; we were told high blood pressure can be caused by valves but it could also be caused by him staying at home raising our daughter. Thoughts and prayers that you get good news at next week's ultrasound.
Update: I had an ultrasound at the Children's Hospital today and met with a pediatric cardiologist. I'm 21w2d. Basically, the doc said he's not ready to give a dx of VSD but still hasn't ruled it out. He said the heart is the size of a dime right now. Baby boy was moving around like crazy and they couldn't get a clear picture. I will need to go back at 27/28 weeks. He also went into depth about how hearts work and what VSD is using a diagram so that was very helpful. He said there's nothing to be done during pregnancy and a lot of times the problems fix themselves by birth. He didn't seem worried about it so I'm not going to worry about it for now. @PleaseSendPicklesNow since your appt is a few weeks away, hopefully there will be some growth and natural fixing done during that time. Also did you know 1 in 100 babies are born with heart defects? That sounds like a lot to me and I don't hear about it much! Best of luck to you.
@austinjl I've been thinking of you--thanks for the update! It's probably frustrating not to get a firm dagnosis, but good that the doctor isn't worried. And I'm happy they didn't find any problems in addition to the possible VSD. I've done a lot of reading lately (understatement!), and it sounds like it's usually a straightforward procedure to close a VSD. Fingers crossed that it closes on its own, though.
Just curious, are you already planning to give birth at a hosital with a good NICU? And/or has your doc suggested you change your birth plan because of the possible VSD? Until we have either a diagnosis or a clean bill of health, our plans are up in the air. It's driving me crazy.
The issue they think they saw in our son is more complicated. Tetralogy of Fallot involves a narrow/blocked pulmonary valve, VSD, aorta mispositioned directly over the VSD, and enlarged right side of the heart. As far as heart defects go, they say it's only moderately serious/dangerous. But I really, really hope they're wrong and he doesn't have it!
Our first appointment is this Friday, and our echo is two weeks later. They want him to be a little bigger before they do the echo. If we're lucky, we'll get a diagnosis on Friday. I'm looking forward to it AND dreading it.
@PleaseSendPicklesNow I have not changed any plans. My ob only delivers at one hospital but it does have a great reputation regionally. I don't know about the nicu specifically but my aunt and uncle came from out of state to get their son treatment for a blood disorder when he was one or two and that was in the 80s. I asked the doc if a DX would change anything with pregnancy and delivery and labor and he said not really. He said there would be more monitoring later in pregnancy but with fetal heart issues, there's not much to be done in utero besides that. He also talked about the narrowing of the pulmonary valve which can cause strain on the heart but again, he wasn't comfortable diagnosing anything. One thing he did ask was if we've lined up a pediatrician which I have not got on top of yet. But will now.
I hope your appt goes well on Friday! I will be thinking of you. Are you going to a children's hospital for an ultrasound? Will you be meeting with a pediatric cardiologist? It really comforted me to hear from a doc who is very familiar with baby hearts! Its amazing to me what they can see and know so early on! Are you feeling movement yet? That was helpful to me during my short waiting period. I was telling myself well, whatever this is it doesn't seem to be bothering baby boy at all! Me and my baby will be sending positive vibes your way this week! (In a non creepy internet stranger way, of course). Good luck.
This list ranks the top 50 Pediatric Cardiology hospitals in the country, according to very specific criteria like experience with different types of conditions, success rates after heart transplants, nurse to patient ratio, and infection-prevention practices. For those of us who may need to change our original plans, go elsewhere, and give birth in a hospital equipped to do heart surgery soon after birth, it's useful.
The more I learn, the more I feel empowered to help our son. And the less I feel afraid.
@PleaseSendPicklesNow I love reading your updates! You are so calm and collected and I really respect that. Glad to see that you are empowering yourself in a very scary situation.
Tomorrow is the big day! We're meeting with a pediatric cardiologist at a hospital ranked pretty close to the top of the list I linked to in my last post. I'm scared, but looking forward to a clear answer.
@austinlj Thank you for your non-creepy internet stranger vibes. The amazing support on this board is definitely helping! It sounds like your original plan was to give birth in a hospital equipped to deal with CHDs. It must be so nice not to change plans.
Our original plan was to give birth at a freestanding birth center. It's affiliated with the big hospital we're going to tomorrow, and it's recognized as a safe and appropriate choice for low risk births. But the birth center is not equipped to deal with CHDs. So if we do get a CHD diagnosis tomorrow, we're going to have to switch to the big hospital. I'm bummed about that--I LOVE the birth center we chose. But naturally, our son's care comes first.
In the meantime, he's flip-flopping all the time! CHD or no, this kid is active.
TTC#1 since Jan 2015 BFP 2/19/15 • MMC found at 9 wks • D&E at 11 wks (age 36) BFP 8/29/15 • CP (age 37)
BFP 11/18/15 • DD born at 41 weeks (age 37/38)
TTC#2 since May 2017 BFP 10/18/17 • MMC found at 8 wks • Misoprostal at 10.5 wks (age 39) BFP 2/16/18 • CP (age 39) BFP 4/13/18 • CP (age 39) BFP 5/07/18 • MMC found at 10.5 wks • D&E at 11.5 wks • Testing showed it was a girl with Trisomy 22. (age 39/40) 9/5/18 Diagnosed with diminished ovarian reserve (4-5 follicles, one ovary had none and was very atrophied) RE says the low egg count is likely causing my recurrent pregnancy loss. Less eggs results in more aneuploidy. BFP 9/24/18 • CP (age 40)
BFP 5/11/19 • Fraternal twins • MMC found at 10w5d (Baby A 6w, Baby B 10w) • Misoprostal at 11 weeks (age 41)
I'd gotten used to the idea of our son having ToF (as much as one can get used to that sort of thing.) The prognosis and survival rate for ToF is good, and I felt confident that we could get through it. Last night, I told my husband, "Whatever happens tomorrow, I'll be okay, as long as they don't diagnose the baby with a hypoplastic heart condition. If that happens, I'm going to lose it." Yeah, I'd done a LOT of research.
Guess what? I'm losing it. They diagnosed our son with hypoplastic left heart syndrome.
Basically, he only has half a heart. The left side is so underdeveloped, it's not functional. Outcomes are much better than they were a decade or two ago. Some families still choose to let a baby with HLHS die peacefully without interventions. For those who choose to fight, it is usually treated with a series of three open heart surgeries that make the right side of the heart do the work of both sides. Statistics on survival rates vary (and are often just based on surviving until release from the hospital?! WTF?!). But it sounds like he has a 50/50 chance.
It's really rare, and we don't know why he has it. No one in our family has it. Our Panorama test showed no indication of Trisomy 13, 18, or 21. It's just a thing that happened.
I keep hoping this is just a nightmare, and at our upcoming fetal echo they say, "Oops! Our bad! It's just ToF." Or something else. Anything else. Yeah, I'm losing it.
I'm so sorry to hear that things didn't turn out the way you wanted them to. I sent you a pm with some contact info of people I know who can give better advise than I can. My heart breaks for you and the tough decisions that are coming your way. Just try to remain hopeful. It's terrifying right now to live in the unknown of what can happen especially with survival rates all over the place but having hope can really help. Let yourself feel all of the emotions that come and have a good support system to help you through them. If you ever need anything please let me know. I am here to lend an ear whenever you need it! Sending you tons and tons of positive thoughts, prayers and hugs!
@PleaseSendPicklesNow oh god! I am so truly sorry that you received that diagnosis! You have been so optimistic up to this point, you are more than allowed to lose it. I am glad that we live in a time with great medical interventions, and hope that your little one has an optimistic outcome!
It is absurd that the survival rates are often based off of release from hospital, as that doesn't tell you much about the long term prognosis. Hopefully your doctors can help paint a more complete picture for you.
It it sounds like you have a long road ahead of you, but I believe you are a fighter and your son will be one too. Take some time away from Google, and surround yourself with support. (((Hugs)))
I am so incredibly sorry to hear this news. My heart aches for you and your family. I'll be thinking of you and sending healing positive thoughts your way.
@PleaseSendPicklesNow I've been thinking of you a lot, and although this may not have been the diagnosis you were expecting there's still a good chance at your baby doing okay. I have a friend in the nursing world who works on the peds heart transplant unit at Children's National in DC. If I can get ahold of him and you want to talk to someone who takes care of these babies on the regular private message me and I can see if I can give you his email. Hoping that your echo will give you more answers than you have now. Keeping you in my thoughts.
I'm so sorry to read this news:( I was hoping for a positive outcome for you today. It sounds like you have a rough road ahead, but we are all here for you.
@PleaseSendPicklesNowI wish I had something helpful to say, but I'm just sorry to hear this. I'm crossing my fingers and toes that the fetal echo will provide some better hope and statistics.That sucks and I hope you can afford to just take some time for you & S/O in the coming weeks.
_______________________________________________
Me: 33 DH: 32 Married 7/18/15 1st born at 35+4 on 6/6/16 Team green turned BLUE! 2nd born at 38+6 on 8/30/18 Team green turned PINK! Due with #3 on 6/6/20 Team Green
@PleaseSendPicklesNow I am so terribly sorry for your news. I am hoping and praying you get more answers and look towards the future. Let us know how we can support you!
Re: A Thread For Congenital Heart Defects
If our son does indeed have Tetralogy of Fallot, without any additional conditions or defects, it looks like there is a WIDE range of severity. Shaun White has it, and he's won Olympic gold medals. Other babies born with it die within a month, often from complications related to surgery. The mortality rate is ~3%. And unfortunately, it always requires a few open-heart surgeries.
We'll get a firm diagnosis at our appointment on March 15. The wait is excruciating. I swing back and forth between despair and optimism. I am afraid to continue working on the nursery. I am afraid of becoming more attached to him, and then losing him.
@msuzannah Your brother is a huge inspiration--and completely adorable! If we get a positive diagnosis, we are hoping for an outcome just like his. I read a bit about hypoplastic heart conditions on a zipper club blog, and WOW. WOW. He must be a very strong little fighter! How much time did your parents spend at the hospital during his first year? We're trying to get an idea of what our new normal might be like. I'll contact our hospital and ask about a parents' group, too. They'll probably be able to tell us a lot about that, as well.
We have so much to learn.
I'm sorry you are stuck in the unsure waiting time right now. It's hard to not know what is going to happen and what to expect especially when it is such a life changing thing. It constantly felt like we had to adjust to things and we just started calling it "the new normal". My mom always jokes that life never lets you get too comfortable because as soon as you do it will throw something else in the way!
I wish that I could say the emotional roller coaster goes away but in 5 1/2 years it's still there all the time. Now it at least doesn't give us whiplash but it's still quite the ride! Just remember that this is not your fault. There is nothing that could be changed to make this different. Things happen in life and that's the way it goes. When we become pregnant those little cells are splitting so fast it's a miracle in of itself that most of us end up normal. Your baby might have a heart defect but that does not mean that he is somehow unable to live a wonderful life. Sure it could mean there are limitations on some of the things that they want to do (my brother probably won't be the most athletic guy in the world but that doesn't stop him from playing at recess and playing tball and chasing everyone around the yard) but limitations do not take away from the quality of life in this case. The fact that you are concerned and that you are looking for ways to help him prove that you are going to be a fabulous mom! You are now able to be the voice for this baby in advocating what is best for him and standing up for his needs when he can't do it. One of the best things you can do at this point is love him unconditionally and love yourself as well. You CAN do this! It's ok to cry and feel lost and upset but at the end of the day you are strong because you are still going!! I'll be sending you positive thoughts and prayers especially for your next appointment! Keep us updated on how you and baby are doing!!
Because of the family history, we have a level II U/S/echocardiogram every pregnancy (ours is scheduled for 25 weeks this pregnancy). We elect to do it so that we have personnel on stand-by at delivery in the event of an issue arising. The GREAT news here is that they have discovered it early! IF it doesn't resolve, then a medical team can be standing by at delivery, reducing risks. Prayers for you and your family as you go through this!
DS: EDD, December 19th, 2014. Born, December 19th, 2014!
DD: EDD, July 18th, 2016. Born, July 19th, 2016!
Baby #3: EDD, April 16th, 2016
I had my a/s today and was surprised to did out that I'm having a boy! I was on cloud nine til the tech brought the doc in. He told me that my baby may have VSD and I have to go to the children's hospital for a more detailed u/s on the heart. He said best case scenario, it fixes itself with time, worst case scenario, baby would need surgery after birth. The tech said they usually do the scan at 24 weeks (I'm 20.5) but I got a phone call 10 mins later scheduling me for next Monday. Made me nervous they're getting me in soon. But I can totally understand it being hard to wait!!!! The tech told me they usually wait a few weeks so the heart is develope a bit more and they can tell for sure what's going on. So maybe that's why you have to wait.
anyway, I'm trying to tell myself to not worry until I know anything definite but easier said than done! I hope you're able to stay as calm as possible (again easier said than done). I feel for your situation and feel free to PM me if you want.
@ladythrice, good luck to you at your upcoming echocardiogram. Do you know if/when your brother needed follow up surgeries later in childhood, or in young adulthood? I am sort of in awe of the nurses who noticed that his color was off. It's so lucky they caught it when they did.
@callen10210 Thank for coming out of lurkdom, because your husband's story is so encouraging. I even read it to my own husband. It makes us both so happy that if our son is diagnosed with ToF, we can still expect a happy and normal life for him after surgery. We don't care if he's not a big athlete. Cuz if he takes after me, he won't be athletic...heart defect or not!
Do you know if/when yr husband needed later surgeries? Or was he one and done after the first?
@austinjl It's a BOY!! Congratulations! But I'm so sorry you got bad news today. This thread is for you, too. And for anyone else who is concerned about their baby's heart. As scary as it is, it sounds like the prognosis can be really good. I'll be thinking about you and your little guy.
@msuzannah You don't know how much you've done to help me, or how many times I've thought about your kind words over the last two days. I am so grateful that you took the time to bolster my spirits when I was at my lowest. I hope you have an amazing day tomorrow and find a $100 bill on the sidewalk. And get treated to a surprise prenatal massage. You deserve it.
So the bad news came last week at a random Zika test appointment. Our anatomy scan is tomorrow. The diagnosis has to come from pediatric cardiology in a few weeks, not from the anatomy scan. But I hope we can learn something new and good tomorrow. Wish us luck!
(Okay, the vomit of rainbows-and-sunshine is over, haha. Carry on with the humor and snark.
IF, 5 losses, 1 son, 1 on the way.
For anyone who's wondering, yesterday ended up being a disappointment: The doc cancelled my 20 week ultrasound because the one we're doing next week with the cardiac specialist makes it redundant. I get it, and I'm glad we won't have to pay for an unneccessary ultrasound, but I really wanted to see the baby.
Married: October 23, 2010
DS: 8/7/2013
#2 EDD: 6/29/2016, C Section: 6/22/2016
Thoughts and prayers that you get good news at next week's ultrasound.
Just curious, are you already planning to give birth at a hosital with a good NICU? And/or has your doc suggested you change your birth plan because of the possible VSD? Until we have either a diagnosis or a clean bill of health, our plans are up in the air. It's driving me crazy.
The issue they think they saw in our son is more complicated. Tetralogy of Fallot involves a narrow/blocked pulmonary valve, VSD, aorta mispositioned directly over the VSD, and enlarged right side of the heart. As far as heart defects go, they say it's only moderately serious/dangerous. But I really, really hope they're wrong and he doesn't have it!
Our first appointment is this Friday, and our echo is two weeks later. They want him to be a little bigger before they do the echo. If we're lucky, we'll get a diagnosis on Friday. I'm looking forward to it AND dreading it.
I hope your appt goes well on Friday! I will be thinking of you. Are you going to a children's hospital for an ultrasound? Will you be meeting with a pediatric cardiologist? It really comforted me to hear from a doc who is very familiar with baby hearts! Its amazing to me what they can see and know so early on! Are you feeling movement yet? That was helpful to me during my short waiting period. I was telling myself well, whatever this is it doesn't seem to be bothering baby boy at all! Me and my baby will be sending positive vibes your way this week! (In a non creepy internet stranger way, of course). Good luck.
https://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
This list ranks the top 50 Pediatric Cardiology hospitals in the country, according to very specific criteria like experience with different types of conditions, success rates after heart transplants, nurse to patient ratio, and infection-prevention practices. For those of us who may need to change our original plans, go elsewhere, and give birth in a hospital equipped to do heart surgery soon after birth, it's useful.
The more I learn, the more I feel empowered to help our son. And the less I feel afraid.
@austinlj Thank you for your non-creepy internet stranger vibes. The amazing support on this board is definitely helping!
Our original plan was to give birth at a freestanding birth center. It's affiliated with the big hospital we're going to tomorrow, and it's recognized as a safe and appropriate choice for low risk births. But the birth center is not equipped to deal with CHDs. So if we do get a CHD diagnosis tomorrow, we're going to have to switch to the big hospital. I'm bummed about that--I LOVE the birth center we chose. But naturally, our son's care comes first.
In the meantime, he's flip-flopping all the time! CHD or no, this kid is active.
DS: EDD, December 19th, 2014. Born, December 19th, 2014!
DD: EDD, July 18th, 2016. Born, July 19th, 2016!
Baby #3: EDD, April 16th, 2016
July16 JULY siggy challenge
BFP 2/19/15 • MMC found at 9 wks • D&E at 11 wks (age 36)
BFP 8/29/15 • CP (age 37)
TTC#2 since May 2017
BFP 10/18/17 • MMC found at 8 wks • Misoprostal at 10.5 wks (age 39)
BFP 2/16/18 • CP (age 39)
BFP 4/13/18 • CP (age 39)
BFP 5/07/18 • MMC found at 10.5 wks • D&E at 11.5 wks • Testing showed it was a girl with Trisomy 22. (age 39/40)
9/5/18 Diagnosed with diminished ovarian reserve (4-5 follicles, one ovary had none and was very atrophied)
RE says the low egg count is likely causing my recurrent pregnancy loss. Less eggs results in more aneuploidy.
BFP 9/24/18 • CP (age 40)
I'd gotten used to the idea of our son having ToF (as much as one can get used to that sort of thing.) The prognosis and survival rate for ToF is good, and I felt confident that we could get through it. Last night, I told my husband, "Whatever happens tomorrow, I'll be okay, as long as they don't diagnose the baby with a hypoplastic heart condition. If that happens, I'm going to lose it." Yeah, I'd done a LOT of research.
Guess what? I'm losing it. They diagnosed our son with hypoplastic left heart syndrome.
Basically, he only has half a heart. The left side is so underdeveloped, it's not functional. Outcomes are much better than they were a decade or two ago. Some families still choose to let a baby with HLHS die peacefully without interventions. For those who choose to fight, it is usually treated with a series of three open heart surgeries that make the right side of the heart do the work of both sides. Statistics on survival rates vary (and are often just based on surviving until release from the hospital?! WTF?!). But it sounds like he has a 50/50 chance.
It's really rare, and we don't know why he has it. No one in our family has it. Our Panorama test showed no indication of Trisomy 13, 18, or 21. It's just a thing that happened.
I keep hoping this is just a nightmare, and at our upcoming fetal echo they say, "Oops! Our bad! It's just ToF." Or something else. Anything else.
Yeah, I'm losing it.
It is absurd that the survival rates are often based off of release from hospital, as that doesn't tell you much about the long term prognosis. Hopefully your doctors can help paint a more complete picture for you.
It it sounds like you have a long road ahead of you, but I believe you are a fighter and your son will be one too. Take some time away from Google, and surround yourself with support. (((Hugs)))
DH: 32
Married 7/18/15
1st born at 35+4 on 6/6/16
Team green turned BLUE!
2nd born at 38+6 on 8/30/18
Team green turned PINK!
Due with #3 on 6/6/20 Team Green