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.
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.
