This is the first time I’m reading this writer. This piece and all of the comments have given me more perspective and cemented the fact that asking people these personal questions is — just not polite to say the least. I have always deeply wanted children but have a (different) disease which also runs in my family. I had to think about many things including what if my child(ren) inherit this too? And it’s something personal, not dinner table conversation. Every woman deserves the right to know her own body and mind and make her own choices in this one “wild and precious” life we are given. To have children or to not have children are of course perfectly valid choices and, of course we have the right to regret any of our choices (just like everyone else) as well as to celebrate our choices (whatever they are)
Having had my corrective surgery in 1974 at the age of 13 yrs old. I was discharged from cardiac care probably around age 14yrs old. I was told that I could do whatever I wanted without restrictions. My mother asked about me having children. We were told it shouldn’t be a problem. There was no such thing as Adult Congenital Heart clinics as far as I knew. I was not referred to another cardiologist upon discharge. I grew up in Dallas, TX where there are great cardiologists and surgeons. They knew what they were doing. They just didn’t have adult CHD care back then.
At age 27 yrs old my husband and I were ready to start a family after being married for 5 yrs. I decided I needed to talk with my OB/GYN before getting pregnant to see if I should go to a cardiologist first. I went for an appointment and I discussed my concerns with him and I asked if him if I should go to a cardiologist before getting pregnant because of my heart history. He asked me, “ Are you having symptoms?” I said, “No.” he said, “Then no.” 😳 I was shocked! I got pregnant and carried her for 41 weeks and had 7lb 7 oz healthy baby girl. He did have a cardiologist follow up after she was born. But he was just a regular cardiologist! After seeing an adult congenital heart Dr I can see the difference in the cardiologists.
I got pregnant again at age 32 yrs old I could feel the five yrs age difference in the second pregnancy. It was too hard on my heart and body. I only carried him for 29 weeks but he was healthy for being as young as he was. I decided, mo more children after that pregnancy.
I tell this to let you know how far CHD care has come since 1974. I am so amazed by the kind of CHD care that is out there now!
Aug 7, 2023·edited Aug 7, 2023Liked by Leigh Kamping-Carder
I do want and have always wanted children, but this resonated so much with me too - I was about 15 the first time my cardiologist said that if I wanted a family, I'd need to start early while my wonky CHD heart could 'still tolerate pregnancy'. I spent most of my twenties agonising about this. I'm now 32, not in a relationship and while my heart hasn't progressed as much as it might have by now, I still wonder if I've missed the boat. I feel like I started worrying about fertility and children a decade earlier than most of my peers, because of the added pressure of my heart and the likelihood of needing valve replacements at some point. It was a big thing for a doctor to tell me offhand as a teenager, but it's also felt like a pressure on my dating life ever since.
I didn’t think I wanted kids because I didn’t think I was equipped to be a mother, let alone dealing with pregnancy and my CHD. But at 33 I fell pregnant accidentally, and we decided to keep him. At my first pregnancy appointment I told my new GP about my CHD, and that was the start of at least 24 appointments throughout the 8 and 1/2 months to follow. My heart struggled. I developed oedema/heart failure (symptoms were the same, treatment was the same) and I delivered, induced and a bit early by Caesarean section. It took my heart 6 months to recover to the point where my cardiologist stopped talking about valve replacements. I have not had another child. It is a decision I regret some days and grieve others, but it doesn’t seem worth my health to try again. I am glad I have my child - my life has become richer with him in it and I’m so pleased he is heart healthy. But I want to say I understand the sentiments about not wanting kids particularly if you know it’s not going to be good for your heart health. We can’t and don’t get everything in life - no one does - and that’s ok because we can appreciate what we do have even more deeply.
Because I was told at a young age that they didn’t think my heart could handle carrying/bearing a child; and lower back surgery at 21 sealed the deal I didn’t think about having kids much. I even ended a relationship because my boyfriend at the time really wanted kids. As I aged I mourned not having kids, and considered fostering. I talked myself out of it due to being single. My mom was single while I and my sibling grew up. It was a struggle and I didn’t think it would be fair to a child.
I fully appreciate this post. Every CHD patient perspective should be valued. As someone involved in helping to develop a CHD and pregnancy research, education and policy roadmap, I can tell you it’s desperately needed because often times patients’ conception counseling varies widely by center with a lack of consensus among ACHD providers. Also, the Fontan Outcomes Network held a family planning panel in 2021 (and one forthcoming in Sept 2023) on adoption, surrogacy, fatherhood, and pregnancy.
Thanks, Scott, that's great to know about the upcoming panel. The last event I attended with FON was a patient conversation that turned about to be about pregnancy (unbeknownst to me when I signed up!). I agree we need better conception counseling, including providing space for women who want options aside from pregnancy.
Now that is an interesting question! I’ve gone through menopause and have NO idea how it affects my heart. In fact, I never knew there was such a thing as a CHD Dr until recently when I started having symptoms.
I've always wanted children. From the moment I could talk enough to answer the question 'what do you want to be when you grow up?' my answer has been 'a mom'. But I've had to decide not to have children. It doesn't even seem like the pregnancy should be the biggest concern despite my complex CHD, my cardiologist was quite confident that we could make it work. But I just don't have the energy to be a mom, and while that may improve a bit from where I'm at now, it's unlikely that I ever will be healthy enough again to be the parent I want to be.
So I've made the heartbreaking decision to not ever try and while I'm definitely still grieving, I'm at peace with my decision and know I'm going the right thing
This resonated with me! I’ve had the same cardiologist since age 15 or so. I just turned 48. He will retire soon and that’s a convo for another day.
He is the type of doctor that has all the conversations. Explained why I shouldn’t smoked, the risks associated with that and drugs, even experimenting. Why I should have protected sex, not only to prevent diseases but the risks of pregnancy with my cardiac condition. I don’t remember when but knew in my teen years I didn’t want kids. My doctor seemed relieve every time I said that. In my first marriage he cautiously asked if we were planning on growing our family and I said no. He’d look at me directly, searching my eyes to see if that really was my hearts desire. Turns out it was my first husbands desire and we split. When my second husband told me the reason for the end of his first marriage was because his then-wife wanted children and he did not I knew he was the one for me.
I feel like I got unlucky in life with these cardiac problems but I’m glad the stars aligned in that my desire to have children and ability to have children aligned. I was have some gynecologic issues in my 30s and I found out I have a severely bicornuate uterus and endometriosis. It all needed to be removed. I still and will forvever say it was my favorite surgery.
You are very correct in that if you say you can’t have kids people drop the subject. I think because most people know of my heart troubles multiple surgeries, etc they assume I can’t and people rarely broach the subject. But the few times it’s happen I look at the situation and whether I want to continue this intimate and personal conversation with them. If I don’t I say I can’t have kids. Kills the conversation immediately. If I say I never wanted them, people want to either convince me or dissect my thoughts and opinions on the subject.
I made the decision not to have a child. I might have made a different decision or adopted if with the right partner but likely not. I considered the shortening & possible reduced quality of life resulting from pregnancy plus the impact to a child of a potentially shorter or sicker life. When I made it clear this was my decision, I had some moralistic push-back from relatives who never once asked why or considered that my health might be the reason for my decision. I don’t regret it (except as you suggest in moments that pass quickly) as the effort & focus needed sometimes to maintain my health now in middle age makes clear that the body & life I’m in could be in far worse shape if I’d endured childbirth & parenting.
I’m now in a caregiving window of my life for an elderly parent. It’s exhausting. I can’t imagine the added difficulty of being a parent at the same time. To those critical of the decision, I’d remind that it’s important to remember that we know our bodies & know what’s at stake with them and to understand that we often sacrifice a lot simply to have a baseline quality of life. Not having kids, whether biological or not, is as valid a personal decision as having them & few make that decision lightly. Looking back I don’t see a different decision on this.
I have desperately wanted kids for more than a decade. What's stopped me is not my heart defect, but the financials involved. I simply cannot afford to have a child and raise it to 18. And that breaks my heart, no pun intended.
In fact, because I've fallen out of cardiac care, I only recently found out that I'd be considered a high-risk pregnancy. At an egg freezing consultation (a process I also can't afford, it turns out), I was told I'd need cardiac clearance just to move forward with that.
So, here I am, 36 years old, and time is passing in a way I never expected.
This is the first time I’m reading this writer. This piece and all of the comments have given me more perspective and cemented the fact that asking people these personal questions is — just not polite to say the least. I have always deeply wanted children but have a (different) disease which also runs in my family. I had to think about many things including what if my child(ren) inherit this too? And it’s something personal, not dinner table conversation. Every woman deserves the right to know her own body and mind and make her own choices in this one “wild and precious” life we are given. To have children or to not have children are of course perfectly valid choices and, of course we have the right to regret any of our choices (just like everyone else) as well as to celebrate our choices (whatever they are)
Having had my corrective surgery in 1974 at the age of 13 yrs old. I was discharged from cardiac care probably around age 14yrs old. I was told that I could do whatever I wanted without restrictions. My mother asked about me having children. We were told it shouldn’t be a problem. There was no such thing as Adult Congenital Heart clinics as far as I knew. I was not referred to another cardiologist upon discharge. I grew up in Dallas, TX where there are great cardiologists and surgeons. They knew what they were doing. They just didn’t have adult CHD care back then.
At age 27 yrs old my husband and I were ready to start a family after being married for 5 yrs. I decided I needed to talk with my OB/GYN before getting pregnant to see if I should go to a cardiologist first. I went for an appointment and I discussed my concerns with him and I asked if him if I should go to a cardiologist before getting pregnant because of my heart history. He asked me, “ Are you having symptoms?” I said, “No.” he said, “Then no.” 😳 I was shocked! I got pregnant and carried her for 41 weeks and had 7lb 7 oz healthy baby girl. He did have a cardiologist follow up after she was born. But he was just a regular cardiologist! After seeing an adult congenital heart Dr I can see the difference in the cardiologists.
I got pregnant again at age 32 yrs old I could feel the five yrs age difference in the second pregnancy. It was too hard on my heart and body. I only carried him for 29 weeks but he was healthy for being as young as he was. I decided, mo more children after that pregnancy.
I tell this to let you know how far CHD care has come since 1974. I am so amazed by the kind of CHD care that is out there now!
I do want and have always wanted children, but this resonated so much with me too - I was about 15 the first time my cardiologist said that if I wanted a family, I'd need to start early while my wonky CHD heart could 'still tolerate pregnancy'. I spent most of my twenties agonising about this. I'm now 32, not in a relationship and while my heart hasn't progressed as much as it might have by now, I still wonder if I've missed the boat. I feel like I started worrying about fertility and children a decade earlier than most of my peers, because of the added pressure of my heart and the likelihood of needing valve replacements at some point. It was a big thing for a doctor to tell me offhand as a teenager, but it's also felt like a pressure on my dating life ever since.
Absolutely! So relate to having that early worry.
I didn’t think I wanted kids because I didn’t think I was equipped to be a mother, let alone dealing with pregnancy and my CHD. But at 33 I fell pregnant accidentally, and we decided to keep him. At my first pregnancy appointment I told my new GP about my CHD, and that was the start of at least 24 appointments throughout the 8 and 1/2 months to follow. My heart struggled. I developed oedema/heart failure (symptoms were the same, treatment was the same) and I delivered, induced and a bit early by Caesarean section. It took my heart 6 months to recover to the point where my cardiologist stopped talking about valve replacements. I have not had another child. It is a decision I regret some days and grieve others, but it doesn’t seem worth my health to try again. I am glad I have my child - my life has become richer with him in it and I’m so pleased he is heart healthy. But I want to say I understand the sentiments about not wanting kids particularly if you know it’s not going to be good for your heart health. We can’t and don’t get everything in life - no one does - and that’s ok because we can appreciate what we do have even more deeply.
Thank you for sharing, Vicki. That sounds tough, but I'm glad you've found joy in having your child. ❤️
Because I was told at a young age that they didn’t think my heart could handle carrying/bearing a child; and lower back surgery at 21 sealed the deal I didn’t think about having kids much. I even ended a relationship because my boyfriend at the time really wanted kids. As I aged I mourned not having kids, and considered fostering. I talked myself out of it due to being single. My mom was single while I and my sibling grew up. It was a struggle and I didn’t think it would be fair to a child.
Thank you for sharing, Roberta! ❤️❤️
I fully appreciate this post. Every CHD patient perspective should be valued. As someone involved in helping to develop a CHD and pregnancy research, education and policy roadmap, I can tell you it’s desperately needed because often times patients’ conception counseling varies widely by center with a lack of consensus among ACHD providers. Also, the Fontan Outcomes Network held a family planning panel in 2021 (and one forthcoming in Sept 2023) on adoption, surrogacy, fatherhood, and pregnancy.
Thanks, Scott, that's great to know about the upcoming panel. The last event I attended with FON was a patient conversation that turned about to be about pregnancy (unbeknownst to me when I signed up!). I agree we need better conception counseling, including providing space for women who want options aside from pregnancy.
I spotted this one, h/t Zipper Sisters! https://twitter.com/ZipperSisters/status/1674993414524354560?s=20
Now that is an interesting question! I’ve gone through menopause and have NO idea how it affects my heart. In fact, I never knew there was such a thing as a CHD Dr until recently when I started having symptoms.
I've always wanted children. From the moment I could talk enough to answer the question 'what do you want to be when you grow up?' my answer has been 'a mom'. But I've had to decide not to have children. It doesn't even seem like the pregnancy should be the biggest concern despite my complex CHD, my cardiologist was quite confident that we could make it work. But I just don't have the energy to be a mom, and while that may improve a bit from where I'm at now, it's unlikely that I ever will be healthy enough again to be the parent I want to be.
So I've made the heartbreaking decision to not ever try and while I'm definitely still grieving, I'm at peace with my decision and know I'm going the right thing
I'm glad you've found peace with this decision. Energy levels are such a key piece of this as well.
This resonated with me! I’ve had the same cardiologist since age 15 or so. I just turned 48. He will retire soon and that’s a convo for another day.
He is the type of doctor that has all the conversations. Explained why I shouldn’t smoked, the risks associated with that and drugs, even experimenting. Why I should have protected sex, not only to prevent diseases but the risks of pregnancy with my cardiac condition. I don’t remember when but knew in my teen years I didn’t want kids. My doctor seemed relieve every time I said that. In my first marriage he cautiously asked if we were planning on growing our family and I said no. He’d look at me directly, searching my eyes to see if that really was my hearts desire. Turns out it was my first husbands desire and we split. When my second husband told me the reason for the end of his first marriage was because his then-wife wanted children and he did not I knew he was the one for me.
I feel like I got unlucky in life with these cardiac problems but I’m glad the stars aligned in that my desire to have children and ability to have children aligned. I was have some gynecologic issues in my 30s and I found out I have a severely bicornuate uterus and endometriosis. It all needed to be removed. I still and will forvever say it was my favorite surgery.
You are very correct in that if you say you can’t have kids people drop the subject. I think because most people know of my heart troubles multiple surgeries, etc they assume I can’t and people rarely broach the subject. But the few times it’s happen I look at the situation and whether I want to continue this intimate and personal conversation with them. If I don’t I say I can’t have kids. Kills the conversation immediately. If I say I never wanted them, people want to either convince me or dissect my thoughts and opinions on the subject.
Thanks for sharing another excellent topic.
Thanks, Yvette! Sounds like we had a lot of the same experiences/thoughts. :)
I made the decision not to have a child. I might have made a different decision or adopted if with the right partner but likely not. I considered the shortening & possible reduced quality of life resulting from pregnancy plus the impact to a child of a potentially shorter or sicker life. When I made it clear this was my decision, I had some moralistic push-back from relatives who never once asked why or considered that my health might be the reason for my decision. I don’t regret it (except as you suggest in moments that pass quickly) as the effort & focus needed sometimes to maintain my health now in middle age makes clear that the body & life I’m in could be in far worse shape if I’d endured childbirth & parenting.
I’m now in a caregiving window of my life for an elderly parent. It’s exhausting. I can’t imagine the added difficulty of being a parent at the same time. To those critical of the decision, I’d remind that it’s important to remember that we know our bodies & know what’s at stake with them and to understand that we often sacrifice a lot simply to have a baseline quality of life. Not having kids, whether biological or not, is as valid a personal decision as having them & few make that decision lightly. Looking back I don’t see a different decision on this.
Thanks for the dialogues. Am appreciating them.
Thank you, Sasha! It sounds like you had a lot of the same considerations as me. ❤️
Seems very much so. ❤️
I have desperately wanted kids for more than a decade. What's stopped me is not my heart defect, but the financials involved. I simply cannot afford to have a child and raise it to 18. And that breaks my heart, no pun intended.
In fact, because I've fallen out of cardiac care, I only recently found out that I'd be considered a high-risk pregnancy. At an egg freezing consultation (a process I also can't afford, it turns out), I was told I'd need cardiac clearance just to move forward with that.
So, here I am, 36 years old, and time is passing in a way I never expected.
That sounds so tough, Shari. Sending you lots of good wishes. ❤️
You are not alone! ❤️
Thank you for sharing, Lynne! Love that point about loving kids even if you don't have them. Being an aunt is one of the great joys of my life. ❤️