@joeweatherly Thank you so much! The support already has amazed my wife and I. I’m sorry to hear about your situation and thank you again for the kind words.
Heart Defect
- Thread starter lyn02
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@lyn02 Wall of text incoming!
TL;DR my son was born with Down syndrome along with several heart defects that required 3 heart surgeries to fix.
I’m so sorry you guys are going through this. It’s hard but try to stay positive and ask as many questions to the cardiac team. You guys WILL get through this, I promise.
My wife and I went through something similar 3 years ago. At her 20 week ultrasound they noticed some issues with our sons heart. So we came back the next day for an echocardiogram of the babies heart and it was revealed that he has a giant hole in his heart (AVSD - Atrioventrical septal defect, DORV - double outlet right ventricle, and Pulmonary Stenosis). Essentially none of his chambers closed so deoxygenated and oxygenated blood were fully mixing and we were told he will most likely need surgeries to correct. Along with this we were told that some other markers indicated he may have a genetic disorder as well. We did the genetic testing and sure enough it came back with a 98% probability for Down Syndrome.
Noah was born via C-section at 36 weeks & 6 days and after seeing him, he was quickly rushed away to the NICU. He was born with Down syndrome and all of the heart defects they had spotted in Utero. He ended up having tet spells and was diagnosed with Tetralogy of Fallot as well and needed a surgery immediately to help him breathe better. They did a BT Shunt surgery which allowed his lungs to get more blood and after a 3 week stay in the hospital we were sent home. Now he did also having swallowing issues so he was being tube fed through an NG tube and he needed to be on supplemental oxygen.
Honestly at the time we didn’t know how we would ever do this. We were constantly in and out of the hospital the first year and he ended up having 2 more open heart surgeries to correct the hole in his heart. His NG tube was upgraded for a GTube (connected directly into his stomach) and slowly his life was getting better.
Now he’s 2 1/2 years old and he’s doing AMAZING. Hes off of oxygen, he tolerates his GTube feeds and is slowly learning how to eat by mouth. He hasn’t had heart surgery for over 1 1/2 years. He’ll need surgeries until he’s an adult but so far he’s holding steady. He’s very delayed but this kid is our absolute joy in life. We see his struggles and see how much effort he puts in his therapies and he works so hard everyday. We couldn’t be happier. Our whole family roots for him and he’s always the center of attention.
It’s not an easy life. There will 100% be challenges in your life but know that it will be so so rewarding. People may look at my life and think it sucks. And to be honest at times it does BUT we are so happy and really can’t imagine our lives without our son.
We did discuss termination and the doctors did a good job of giving us realistic outcomes. Reading what other parents went through in our FB groups really helped us be more positive about his diagnosis and our decision to proceed with the pregnancy. That decision is ultimately up to you.
Go into that meeting tomorrow with an open mind and ask all the questions you can think of. Here’s a few I would definitely ask:
Another thing to add is that if you are considering to keep your child, don’t opt for an amniocentesis since that does carry a miscarriage risk.
If there are other childrens hospitals in the CT area, I would recommend reaching out and getting a 2nd opinion. We did that as well and chose the hospital with the team that we felt would give the best care for him and for us.
Feel free to DM me with questions or just to talk things through.
I pray for the best outcome for you and your child!
TL;DR my son was born with Down syndrome along with several heart defects that required 3 heart surgeries to fix.
I’m so sorry you guys are going through this. It’s hard but try to stay positive and ask as many questions to the cardiac team. You guys WILL get through this, I promise.
My wife and I went through something similar 3 years ago. At her 20 week ultrasound they noticed some issues with our sons heart. So we came back the next day for an echocardiogram of the babies heart and it was revealed that he has a giant hole in his heart (AVSD - Atrioventrical septal defect, DORV - double outlet right ventricle, and Pulmonary Stenosis). Essentially none of his chambers closed so deoxygenated and oxygenated blood were fully mixing and we were told he will most likely need surgeries to correct. Along with this we were told that some other markers indicated he may have a genetic disorder as well. We did the genetic testing and sure enough it came back with a 98% probability for Down Syndrome.
Noah was born via C-section at 36 weeks & 6 days and after seeing him, he was quickly rushed away to the NICU. He was born with Down syndrome and all of the heart defects they had spotted in Utero. He ended up having tet spells and was diagnosed with Tetralogy of Fallot as well and needed a surgery immediately to help him breathe better. They did a BT Shunt surgery which allowed his lungs to get more blood and after a 3 week stay in the hospital we were sent home. Now he did also having swallowing issues so he was being tube fed through an NG tube and he needed to be on supplemental oxygen.
Honestly at the time we didn’t know how we would ever do this. We were constantly in and out of the hospital the first year and he ended up having 2 more open heart surgeries to correct the hole in his heart. His NG tube was upgraded for a GTube (connected directly into his stomach) and slowly his life was getting better.
Now he’s 2 1/2 years old and he’s doing AMAZING. Hes off of oxygen, he tolerates his GTube feeds and is slowly learning how to eat by mouth. He hasn’t had heart surgery for over 1 1/2 years. He’ll need surgeries until he’s an adult but so far he’s holding steady. He’s very delayed but this kid is our absolute joy in life. We see his struggles and see how much effort he puts in his therapies and he works so hard everyday. We couldn’t be happier. Our whole family roots for him and he’s always the center of attention.
It’s not an easy life. There will 100% be challenges in your life but know that it will be so so rewarding. People may look at my life and think it sucks. And to be honest at times it does BUT we are so happy and really can’t imagine our lives without our son.
We did discuss termination and the doctors did a good job of giving us realistic outcomes. Reading what other parents went through in our FB groups really helped us be more positive about his diagnosis and our decision to proceed with the pregnancy. That decision is ultimately up to you.
Go into that meeting tomorrow with an open mind and ask all the questions you can think of. Here’s a few I would definitely ask:
- what kind of surgery will be required?
- how many surgeries will be needed?
- what are the risks of surgery?
- how long do babies with this condition typically stay in the hospital after birth?
- how many cases have you seen at your hospital with heterotaxy?
- what is the survival rate?
- is there any indication of other organs being effected?
- will the baby be in the NICU right after birth?
- Does the NICU have individual private rooms or do they have pods? (I would 100% opt for a hospital who has individual private NICU rooms. Pods just don’t give you or your baby any privacy and introduces outside risks from other parents in that environment)
- is a natural birth still possible or will a C-section be required?
Another thing to add is that if you are considering to keep your child, don’t opt for an amniocentesis since that does carry a miscarriage risk.
If there are other childrens hospitals in the CT area, I would recommend reaching out and getting a 2nd opinion. We did that as well and chose the hospital with the team that we felt would give the best care for him and for us.
Feel free to DM me with questions or just to talk things through.
I pray for the best outcome for you and your child!
@erika1977 Thank you for all of the information! I definitely added questions to our list based on your recommendations. Thank you again for reaching out, and I hope all goes well with you and your family!
@nicaea_1q Thank you!
@lyn02 I'm so sorry you're ging through this. I'm a Pediatric ICU nurse, and I take care of a lot of infants with congenital heart defects, heterotaxy being one of them. Like some people said, there's a lot of variables still. But it is a very complex cardiac condition that usually comes with missing organs (usually spleen being among them, which means being immunocompromised).
What people don't tell you about pediatric cardiac surgery is that yes, there are so so many things we can do nowadays. But a lot of these kids are in and out of the hospital, and that's of everything goes well. If something goes wrong, they STAY in the hospital (sepsis, feeding issues, poor respiratory function, etc).
I don't want to keep scaring you with things, but I am echoing what everyone already said. Keep an open mind when you meet with the cardiologist. I will say though, that the most common sentiment Pediatric ICU nurses feel is that palliative care should be offered more often, not just surgical fixes.
I'm happy to answer any questions you may have, but I think just waiting for now may be your best bet. I do want to end this with a happier note, that I have taken care of adolescents with heterotaxy. So outcome can be good, if all goes well.
What people don't tell you about pediatric cardiac surgery is that yes, there are so so many things we can do nowadays. But a lot of these kids are in and out of the hospital, and that's of everything goes well. If something goes wrong, they STAY in the hospital (sepsis, feeding issues, poor respiratory function, etc).
I don't want to keep scaring you with things, but I am echoing what everyone already said. Keep an open mind when you meet with the cardiologist. I will say though, that the most common sentiment Pediatric ICU nurses feel is that palliative care should be offered more often, not just surgical fixes.
I'm happy to answer any questions you may have, but I think just waiting for now may be your best bet. I do want to end this with a happier note, that I have taken care of adolescents with heterotaxy. So outcome can be good, if all goes well.
@bambooman Thank you very much for the information!!
@bambooman Thank you for sharing this. A lot of the questions we have for the specialist tomorrow are focusing around quality of life. Surgery so early on is scary-but the idea of her being in and our of the hospital for the rest of her life absolutely terrifies me. I don't want her life to be endless doctors, tests and suffering-with little time to live. I've seen some people share that there was little to know doctor/hospital intervention after corrective surgery (my brother is actually an example of this) and that would be best case scenario, but I know it's no guarantee. Thank you for all you do in your career every day. The world is lucky to have you. -OP's wife.
@nicknicks Surgery during the first few days of life will depend on what defect your baby will have. Usually with heterotaxy, there's another cardiac defect. Since it's a problem with how organs line up (left or right), some vessels in the heart don't form properly so that needs to be fixed right away. But it all depends on what other defect she will have.
It is scary. I always tell parents that it's so much worse for them than it is for their kids, becuase you guys have to witness everything and you will remember this. The kids don't. And the recovery post op is not short. It requires rehab, education and constant monitoring. On top of that, with asplenia (no spleen), every fever requires a visit to the ER, for example. She will need to get blood cultures. She will need to be on preventative antibiotics until she's 5 years old because not having a spleen increases her risk of infection.
I'm sorry, I don't mean to worry you. You mentioned hoping for minimal testing, and I wanted to mention that just because the initial repair is done, doesn't mean you're mostly done with the hospital. This is usually what parents think, and we hate hate hate it. I don't think surgeons and cardiologists do a good job painting a clear picture of what it can look like after surgery, mostly becuase it's unknown. I get that. But what happens is it just gives parents a false view of the future. So when it's not what they expect, it's so much more stressful. So when you meet with your cardiologist, make sure to be straight with them and ask about quality of life long-term.
I want to add that a lot of our cardiac surgery patients do well, especially those with great support systems, ie parents who are involved and well educated on this matter. But it is a lot of work and stress, emotionally, physically, and mentally for everyone in the family.
Thank you for the kind words. Please don't hesitate to reach out if you have any questions. I love what I do and I'm happy to help!
It is scary. I always tell parents that it's so much worse for them than it is for their kids, becuase you guys have to witness everything and you will remember this. The kids don't. And the recovery post op is not short. It requires rehab, education and constant monitoring. On top of that, with asplenia (no spleen), every fever requires a visit to the ER, for example. She will need to get blood cultures. She will need to be on preventative antibiotics until she's 5 years old because not having a spleen increases her risk of infection.
I'm sorry, I don't mean to worry you. You mentioned hoping for minimal testing, and I wanted to mention that just because the initial repair is done, doesn't mean you're mostly done with the hospital. This is usually what parents think, and we hate hate hate it. I don't think surgeons and cardiologists do a good job painting a clear picture of what it can look like after surgery, mostly becuase it's unknown. I get that. But what happens is it just gives parents a false view of the future. So when it's not what they expect, it's so much more stressful. So when you meet with your cardiologist, make sure to be straight with them and ask about quality of life long-term.
I want to add that a lot of our cardiac surgery patients do well, especially those with great support systems, ie parents who are involved and well educated on this matter. But it is a lot of work and stress, emotionally, physically, and mentally for everyone in the family.
Thank you for the kind words. Please don't hesitate to reach out if you have any questions. I love what I do and I'm happy to help!
@lyn02 Just came across your post. My daughter has heterotaxy.
Please join the facebook "heterotaxy connection support" group on facebook. There are not a lot of us, but more resources and help on those pages than you can imagine. You can see the great, the good, and the bad. If you need anything feel free to chat with me.
Please join the facebook "heterotaxy connection support" group on facebook. There are not a lot of us, but more resources and help on those pages than you can imagine. You can see the great, the good, and the bad. If you need anything feel free to chat with me.
catalinafair
New member
@lyn02 I have polysplenia with multiple congenital abnormalities including azygous continuation of the IVC, intestinal malrotation, preduodenal portal vein, etc..
I’m turning 46 next month and have had relatively few resulting health issues throughout my life. In fact, I didn’t even learn the term Heterotaxy until a couple weeks ago.
I had some digestive issues (written off as IBS) since childhood.
Found out about my abdominal malrotation after an emergency appendectomy (age 26).
Didn’t learn about the polysplenia until age 37 a 2015 CT scan but didn’t realize the cardiac anomaly part then bc I wasn’t having any symptoms and didn’t really look into it too deeply.
Just started researching further this year because I had an abnormal EKG.
It’s been a weird bread-crumbing process of unraveling additional details throughout my life.
Sharing in case I can bring some hope to you. It just might turn out ok.
I’m turning 46 next month and have had relatively few resulting health issues throughout my life. In fact, I didn’t even learn the term Heterotaxy until a couple weeks ago.
I had some digestive issues (written off as IBS) since childhood.
Found out about my abdominal malrotation after an emergency appendectomy (age 26).Didn’t learn about the polysplenia until age 37 a 2015 CT scan but didn’t realize the cardiac anomaly part then bc I wasn’t having any symptoms and didn’t really look into it too deeply.
Just started researching further this year because I had an abnormal EKG.
It’s been a weird bread-crumbing process of unraveling additional details throughout my life.
Sharing in case I can bring some hope to you. It just might turn out ok.
@catalinafair Oh wow! Thank you for reaching out! Almost everything you’re mentioning are things we’ve found out our daughter will have after we’ve had further testing done. Hearing that you’ve been relatively okay (very sorry to hear about any issues you have had) gives us even more hope since our doctors will be aware of this all and do what they can to fix it right from the start. I hope everything goes well for you moving forward!
@ansonthms Thank you for reaching out! She’s 4 months old now and doing great! She should need just 1 heart surgery, and not until 3 years old now which is unbelievable. She’s such a happy perfect baby.
@lyn02 Thank you for the reply! They think my daughter has a serious heart defect, and maybe heterotaxy. We have no idea what to think or expect, as it seems like such a rare diagnosis. I'm glad to hear that things have turned out better than you'd expected. If you have any advice, I would love to hear it.
@lyn02 Thank you! I will try to stay off Google. I've been driving myself nuts, but the reality is that we don't have a set diagnosis yet. I was only 15 weeks at the scan, so they couldn't see enough detail to know, but seem convinced some things are wrong (stomach in wrong spot, heart defect). The not knowing is very hard. We're doing an amnio next week, and another scan where we hope to see more. Then on to cardio somewhere around 20-22w. We're a long way from Boston, but blessed to have good options nearby. I'm surprised you're in Boston, as I took your handle to mean you're in Scotland.
Thank you so much for your kindness- it's amazing to hear your daughter is doing so well. And it is so nice to speak to someone who knows what this experience is like. I may well take you up on the questions as we learn more.
Thank you so much for your kindness- it's amazing to hear your daughter is doing so well. And it is so nice to speak to someone who knows what this experience is like. I may well take you up on the questions as we learn more.