Heart Defect

lyn02

New member
UPDATE 8/10/22

First of all, my wife and I cannot say enough how much we appreciated all of the advice, information and just kind words we received on here after my initial post on Monday.

I am absolutely thrilled to report that the visit this morning went as well as it possibly could have given the condition. The left side of the heart is smaller, but not too much smaller. There are also 2 holes in her heart and an issue with the aortic arch.

There are 2 main surgery paths that are likely (with obviously more needed depending on complications and other findings etc):

Option 1 is the best one but it is still open heart surgery within a few days of her being born that could possibly fix the heart in 1 surgery, or fix one part with that and the rest with another surgery a few months later and then that should be the end of it. We should be able to take her home from the hospital about 3 weeks after birth with this option.

Option 2 is 3-4 surgeries from a few days old until she’s 2-4 years old and is much more complex and leads to more risks later in life. The doctor feels very optimistic that option 1 will be possible based on how the heart looks now. We should be able to take her home from the hospital about 4-5 weeks after birth with this option.

On top of that, with this condition it’s likely that multiple organs are either in the wrong place, missing, or multiplied. They won’t know on that until they can give her an ultrasound after birth. At minimum we know the stomach is on the wrong side.

She will also be immunocompromised, as one of the most common thing with this condition is either issues with the spleen or having no spleen at all, so she’ll be on antibiotics the first 5 years of life or so.

After all this, the good news is that with either surgery option she should be able to run around and play sports and be a kid and grow up as normally as possible other than needing a few checkups a year. Option 2 can lead to some issues later in life, but by then hopefully medicine just keeps progressing. My wife can also still carry to fully term, give birth naturally and breast feed.

We also have the preliminary amniocentesis results from Monday and that all looks great, including no Down’s syndrome (which is associated with Heterotaxy).

Other than all that, she is the perfect size and heartbeat and weight and all of that. Moving around a bunch.

Given the options we unfortunately were considering, knowing that we’ll be having this baby and she can still have a great life is the best news I have ever gotten. I never thought I’d he happy knowing my baby will need open heart surgery (and possibly multiple), but compared to the alternatives that were proposed we consider ourselves lucky.

We still have an extremely long and difficult road ahead, but we couldn’t be happier with today’s news.

Thank you all again, truly.

Original post 8/8/22

We were referred to maternal fetal medicine after the ultrasound tech at our practice had trouble getting images of our daughter’s heart. This morning we learned today that our daughter has a very rare congenital heart condition, heterotaxy. We don’t know the type (there are several variations of this) but are meeting with a cardiologist Wednesday morning. If anyone has any experience or knowledge regarding this subject (good or bad) we would really appreciate it. We’re doing our best to do research but there are so many variables and we just keep getting more confused the more we do research. We’re 22 weeks 0 days today and we are located in CT, which allows termination up to 24 weeks. We were not prepared for this, and the idea of termination has already destroyed us-but some of the cases that we are reading about make us realize this is an option we have to consider, so any responses that involve or have to do with termination are OK, and we won’t consider them insensitive. Please just be respectful as I am not looking for pro life/choice debate.

I also want to say that the doctor and ultrasound tech did a phenomenal job at taking care of my wife today. They were the perfect mix of compassionate and professional in delivering this horrifying news and performing an impromptu amniocentesis. We are so thankful for them today.
 
@lyn02 Heterotaxy is rare and varies from patient to patient. It can affect other organs also, which may be dysfunctional or partially/completely missing. The severity depends on your fetus’ specific development. I recommend waiting to meet with the cardiologist to be presented with options for your specific circumstances. I know waiting is easier said than done, but for now just know that people are here and (hopefully) in your life to support you and your wife. Any decision involving medical care, including termination, should be solely up to you two and your medical professionals. Good luck brother

Source: Pediatric/Neonatal critical care transport paramedic

Information from Boston Children’s https://www.childrenshospital.org/conditions/heterotaxy
 
@lyn02 I unfortunately have no advice or insight. I however wanted to wish you and yours as much well wishes as I can as a fellow ct predad. Good luck and I hope for the best for you guys!
 
@lyn02 Unfortunately, I, like others cannot speak to anything similar, but I suggest audio recording (with permission… maybe) your meeting with the cardiologist because in my experience you forget a lot of what is said and it maybe be helpful to listen to the conversation again afterward
 
@kaite Audio recording is a good idea, but I would at least ask for permission. The legality of recording conversations can vary by state, so I would at least let them know that you're recording the conversation in order to recall details later.
 
@lyn02 My baby was born with a less severe defect. She has mesocardia, meaning her heart is in the center of her chest pointing towards the right. It's associated with all kinds of conditions, both genetic and otherwise, but she has no associated conditions. Despite the fact that I had 8 ultrasounds from 21 weeks onwards and at every one, they looked at the heart first, not a single person caught it, a fact that I'm still a bit salty about. It was diagnosed when she was 3 days old, right before we left the hospital because the pediatric cardiologist wasn't in until then, but the NICU nurses noticed that she sounded "a little right sided" as they called it. The cardiologist just said that her heart was just turned slightly, but there were no other issues and no followup was needed. (The NICU was unrelated, she was just very tiny, 5.6 lbs, and came fast, so she needed a bit more suction than they could offer in the delivery room.) She's now almost 9 months old and a bringer of chaos, standing and crawling everywhere, and we haven't noticed any issues. We did buy an Owlet monitor just for our peace of mind, but that was before they took the old version off the market.

I'll have you in my thoughts until you're able to learn more about it. I know how hard it was to even wait the ~3 days from when the nurses told me to when we found out she had no other issues, and how much googling I did. I hope for the best for all of you.
 
@merv1948 Hi-I’m the OP’s wife. I am so heartbroken you had to go through that, I would have been pretty upset it was missed too. I’m so happy to hear you little one is doing well and we are wishing you so much health and happiness. Thank you for taking the time to share, this was really helpful for us to hear ❤️
 
@merv1948 I hope you don’t mind my asking— those 8 ultrasounds, we’re any of them a fetal echocardiogram? You mentioned they looked at her heart first every single time.
 
@merv1948 I’m really glad she’s doing okay. I would be incredibly frustrated by this too.

We had two anatomy scans and a fetal echo (precaution) where they identified an issue that they weren’t even looking for. The fetal cardiologist counseled me and they did a follow up echo to monitor the issue and the issue “resolved” but I have concerns about the technician and the measurements that were taken. The fetal cardiologist said no need for more follow up (beyond growth scans) but also that they won’t know for sure for sure that there aren’t any issues until after birth (next month). We’ve had a few growth scans, but the growth scans feel woefully inadequate. It’s just hard.

Thank you for sharing your experience. Also, love that you call her a “bringer of chaos” lol.
 
@lyn02 Absolutely heartbreaking situation. I have nothing to add other than I have known of three people born with heart conditions, HLHS and Heterotaxy being among them, that had a rough start in life but when on to achieve incredible things (physically even).

Look up Meg Roswick-Didier--its more HLHS specific but maybe it would help to see a joyful outcome and how much she has accomplished despite her start and been in numerous documentaries and presentations so I'm sure she wouldn't mind me throwing her name around if it helps someone.

When there's still so much unknown, maybe its best to focus your education on the subject with whatever happier outcomes you can find.
 
@nicknicks One more story that might help conjure up some strength. There was a poster on /r/daddit a year ago who started posting about his son who was born around 24 weeks really early. It had a huge impact on the sub and we were all closely following week by week updates until today where he's home and growing like a champ. His difficulties were a little different but still a heartwarming example of strength and perserverance.


We still get updates over at /r/corbinscorner
 
@jackspec Also a fantastic example of how wonderful and supportive people can be. This sub, and a few others we are a part of have been so incredibly comforting during this time. Please know how much we appreciate all of you. -OP's wife
 
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