The ethics of procreation and heritable cardiovascular defects

[Duff Man]

I've already "pulled the trigger" so to speak in regards to this topic, but I'm wondering - does anyone else feel irresponsible for procreating when they have a known genetic trait that can be passed on to your offspring?

For a long time I swore off having children. In part because of my youth, but also because of my seemingly astronomical luck of being a juvenile hypertensive, BAV with a newly discovered aneurysm. I assume(d) these traits would be passed on to my child.

My conclusion: After a lot of consideration I decided that it would be worse to not ever have existed than to exist with a handicap. There are things worse than death or not living and those things probably can result from valve issues, but I believe in 20 years medical advancements in the discipline of valve replacement will make the procedure nearly 100% survivable. Children born with cardiovascular issues today have an amazingly better outlook for quality of life than say, 50 years ago.

Whucha think, VR.com?

 

[Ross]

I don't feel irresponsible because I didn't have a clue to my problems until after my children were born. Now, I worry that either my sons or their kids will have problems. It sucks. 11 years after getting married, this health thing took the nose dive.

 

[Duff Man]

I don't feel irresponsible because I didn't have a clue to my problems until after my children were born. Now, I worry that either my sons or their kids will have problems. It sucks. 11 years after getting married, this health thing took the nose dive.

Ok, but knowing what you know now, would you still have procreated?

 

[Harrybaby666]

Duff Man....I chose not to have children because....

Duff Man....I chose not to have children because....

I have always had bad health since I was a baby, and I couldn't bear the thought of having children that 1, could possibly be put in a fatherless situation, or 2, as Ross is now doing, worrying that the children will have the same thing or worse as far as health issues. I have medical issues that involve the heart, lungs, kidneys and mobility issues, and I chose to not put anyone else besides myself through this. I suppose that it depends greatly upon the individual and the individual's personal circumstances as well.

 

[Ross]

Ok, but knowing what you know now, would you still have procreated?

Nope. Would have went through the motions though.

 

[Duff Man]

This is very interesting. I'm excited to see what others say.

I never minded the practice either, bro. Yes, I said minded.

 

[Bina]

Interesting question......I have to say that if I was at the age of pondering procreation and my health was a mess and I had a heritable condition of extreme severity, then I would not want to have a child and pass that on. There are numerous diseases and conditions that fall into that category, and I would put valve replacement much lower down on that list. Bear in mind that a horrible accident can also change a child's life forever.....We just never know what is in store for us, and we do the best that we can.

 

[ALCapshaw2]

I have always had bad health since I was a baby, and I couldn't bear the thought of having children that 1, could possibly be put in a fatherless situation, or 2, as Ross is now doing, worrying that the children will have the same thing or worse as far as health issues. I have medical issues that involve the heart, lungs, kidneys and mobility issues, and I chose to not put anyone else besides myself through this. I suppose that it depends greatly upon the individual and the individual's personal circumstances as well.

In my *opinion*, you made a Wise and Responsible Choice Harry.

 

[psalmist]

How Can You Know?

How Can You Know?

Life is full of risks and chances. Understandably you, as a caring person, weighs
the consequences of ones choices upon other (ie their children). How do you know you will pass it on. Who is there that is born that will not die. Invariably of
some sort of disease. Truth is we all die. Through accident, age, or disease. Ask yourself this question. If a person chose not to have children on the premise that they have a chance of a particular disease, how many people would not be here? Life is precious because it is not forever and no one knows how long we have.

 

[Harrybaby666]

Well I guess you can't PSalmist...but....

Well I guess you can't PSalmist...but....

There is also the practical side of things. For instance, I am on a very limited income and I could not support a wife or children on the amount that I get for an income, and truthfully, there are other circumstances that I haven't discussed that are personal that also have affected my decision as well, but, as I have said, it is an individual decision as we all have our own circumstances. Would I have loved to have a family, most definitely, do I want them to have to deal with my illnesses and possibly aquire them as well, most definitely NOT.

You ask, How can you know? A lot of people can't possibly know, But, when one has been sick all of there lives with one health issue or another, you get to thinking, hey, why would I want a wife or my children to endure what I am going through or possibly aquire the illness(es) themselves?

I am already upset to know that my niece who is 2 1/2 has developed Asthma like me, so that tells me that I have made the right choice for me. This may not be the right choice for some, all I am saying is that it was the right choice for me.

 

[Marguerite53]

You know, Duff..... the mere fact that you are truly wanting offspring of your own, that you have chosen and desire to create a new life and to become completely responsible and willing to give it your all no matter what makes me think you must try for it. Any child brought into such a loving environment will prosper.

I learned about my bicuspid valve just before I got married. I was told it was a somewhat benign condition, nothing to worry about, that maybe in my late 70's I would have to deal with it. No doctor ever explained aortic stenosis to me. I was only told to get an echo every 5 years and to ward of "something" called bacterial endocarditis by using antibiotics for dental work and other invasive stuff. This hardly seemed like a life-threatening situation to me!

I had (have) 3 very healthy children. After my surgery I made arrangements for them to have echocardiograms. The boys (older) went to a university echo study. I have no idea what the machines or techs were like. The oldest has an "enlarged heart" but by such an infintessimal fraction I am not supposed to worry. The younger son has mitral valve prolapse and at 6'1", 140# Gumby like double jointedness looks like a Marfan's poster child. The youngest, a daughter has some aortic regurgitation. She was looked at by a cardiologist so I know this is true. She has just 2 days ago completed a very strenuous athletic career in college (she graduates in May). Currently they are all super-fine!!

So did all that stuff come from me????

Who knows. Not only will science improve but diagnoses will become more prevalent. I'm wondering if most of us on the planet aren't walking around with some little cardiac oddity anyway. What IS a perfect heart?

The perfect heart is the one that is open to give. Yours is. Go for it!!! Please!

Best wishes.

Marguerite

 

[ctyguy]

I didn't know I had an issue when I had kids. Actually my youngest (21) is going to see my cardio when he gets home from college next week to see if I handed down my BAV to him. As to the question would I have had kids ? I guess it depends on the chances of handing it down, and what was I handing down. Given how my life has gone thus far and if all I was giving him was the BAV (even a 100% chance) then I would say yes, I would still have kids. OHS sucked and the fact that Im going to have to be on a short leash for certain activities for the rest of my life doesn't outweigh the joy that I have experienced in life with my kids and more importantly the joy THEY have experienced in their lives. I know my son has the same personal fortitude I have and if he faces OHS he will pass that test as well as I did if not better. Now if I had some type of horrible genetic defect where there was a significant chance that my child would have a poor quality of life then I would say no to having kids and I would have gone the adoption route. Im talking some of heart issues seen in the children of some of the VR members (those posts just eat at me in a bad bad way), Parkinson's disease, cancer at a young age, blindness, mental issues, etc...

 

[T-Money]

BAV and Kids

BAV and Kids

Hi Folks.
Here's my 2 cents. I have BAV with aortic aneurysm and had a Bentall procedure to fix the valve and the aorta. We saw a genetics person and she told us our kid would have a 25-50% chance (I forget the exact number) that our kid would have the problems that led me to OHS. Knowing that we decided to have kids because I didn't find OHS/rehab/coumadin to be that big of a deal at 32. He is 2.5 and so far, the doctors have said his heart sounds fine and we will get an echo in the next year or so. I don't have any additional problems, so I know that others may feel differently about this issue.
T

 

[Dawn-Marie]

Hi Duff ~ I agree with Marguerite...Go for it if you truly want a family. I say this because the reason i had my cancerous tumor in the first place that ultimately caused my paralysis is that i was born with Multiple Hereditary Exostosis. What it is are benign growths on bones. They can cause problems depending on where they occur. I had to have several removed as a child and teenager because they were on my ankles and knees and would have affected the growth of my legs. My father didn't even know he had it until he joined the army in the early 50's. They found one on his rib and it never bothered him. They didn't know a lot about them back then. I got diagnosed with them when i was 2 months old when a large one popped up on my chest. They knew nothing about them in the early 50's when i was born. Mostly they just removed them when they caused problems and said they would disappear when i became an adult. Unfortunately, back then, they didn't know that some become cancerous when you're an adult (only 1%). That's what happened to me..when i was 25 i had a benign growth and 2 of my ribs removed. I thought that was the end of it and i would be fine like the other times when they were removed. I didn't know the doctor hadn't removed all the tumor and it, therefore, would come back as a cancerous Chondrosarcoma on my ribs and spine when i was 29. I felt so bad for my father...he always blamed himself for what happened to me, despite the fact that i repeatedly told him i never blamed him for a thing.

Despite all i've been through with the Multiple Hereditary Exostosis and being paralyzed the past 27 years, i am SO thankful for my life and have enjoyed it very much for the most part and i'm so glad i was born! I was born with a Bicuspid Aortic Valve (which they didn't realize i had til Nov., 2007...they always told me my heart murmur was "innocent"). I don't think it was hereditary though as my father died at 80 from Parkinson's Disease and my mother died from diabetes and smoking 4 packs of cigarettes a day.

Having children when you have health issues that might be hereditary is a personal choice we all have to make. I had to have my ovaries removed due to another health problem, so i couldn't make the choice. If we could have had children, Rich and I probably would have. He had 3 children (3 to 11 years old when we first got together), so it was like having a family even though they were not my biological children. Like i said, Multiple Hereditary Exostosis is normally not as bad as it was for me. It's just an inconvenience at times.

There is no right or wrong decision. For Harry, not having children is what he decided is right for him. For you, if you want children to love. go for it! All i know is that, despite everything that has happened to me, i am so glad that i was born and that i have experienced this wonderful life!!

Dawn-Marie

Dawn-Marie

 

[Lisa in Katy]

My brother had a BAV and associated aneurysm that he had fixed in his late 20's. As far as we know, no one in our family had one before him, although both my grandfathers died of heart attacks at age 58, which could have been caused by BAV. Who knows? My brother's children are now 17 and 20, and were born after his diagnosis, but prior to his surgery. Neither of them have BAV. What if he had chosen not to have children? I guess in the grand scheme of things, BAV is very minor, so I wouldn't worry about the risk of passing it on.

Frankly, if people didn't have children because of the risk of passing on something genetic, I wouldn't be here. My grandmother and 8 of her 9 siblings all had some type of cancer. (The 9th died young in WWII.) My grandmother had breast cancer twice and several skin cancers, one of which was the more dangerous kind, all of which can be inherited. My mother could have looked at that history and decided not to have children, but she didn't. That is why my sister, brother, and I are all here! By the way, my grandmother turned 100 last week.

 

[ryen0]

Your kind of asking an age old philosophical question. Is it better to be alive regardless of the circumstances? You could also say besides disease, that this world is a pretty shitty place to exist in and why should we bring children into it? I'll say what my parents told me. If you wait for every single little thing to be perfect before you have a kid, you'll never have them. I sometimes think myself that maybe i would want to be some one else that doesn't have a heart condition. But then i wouldn't have all the great family and friends, not to mention great childhood memories. So if i have to deal with this condition, it's still better than my parents never having me.

 

[hensylee]

I start reading from the last post back to the first. I was going to say just what you said in your original post.

Look how far modern medicine has come during your lifetime (not even to hardly mention mine - 76). I expect as time passes there will be something for nearly every problem humans have - maybe not a cure or total fix, but close. If I was young, wanted children, I would have them. As long as I would be healthy enough to care for them.

 

[thenewmarket]

My husband was diagnosed with BAV/Ascending Aneurysm at 51 and it was a TOTAL shock. At the time, our daughters were ages 25 and 20. Since his surgery, they have each had the appropriate testing and they do not have BAV. Even if we had know about my husband's BAV, we would've chosen to have children. We are blessed in many, many ways, but our daughters are our greatest blessings here on earth. For us, our lives wouldn't have been complete without children.

 

[pamela]

I had my children before I knew I had BAV. I should have had a clear diagnosis before I risked a 3rd pregnancy never mind the successful carry of my lovely daughter but the imaging technician was still in training and the military ortho surgeon read it as ok even though they didn't get a view of my aortic valve.

I risked myself and my child without knowledge of the dangers, I'm glad I did. Even though the gene may have passed into this new generation, I feel my kids and my life reap more rewards for their existance than if I'd never given them life.

They are gifts to me and life is my gift to them. I try every day to make certain that they have the tools to make the living as wonderful as they choose. I don't think I'd have risked my life as I did with my daughter if I'd understood the potential dangers of pregnancy, I had a husband and a child already, my second baby was simply because we were in a position to have and provide a reasonably nice life for our children.

Passing a heritable trait on to my kids would have been a negligible factor in birthing them, being able to provide a fun and fulfilling life is of much higher import and that is what I would weigh my decision with.

For all we know, being blond may carry a gene for hairy nostrils, that doesn't change my attitude towards kids any more than having a bicuspid valve guarantees unsolvable difficulties.

Take Heart, there are people who never have an issue with their bicuspid valves and live to healthy old age, a BAV is not a death knell.
Pamela.

 

[gf1962]

I was told of my BAV when I was about 17. In my younger years I did not let this stop me. Went onto a career in law enforcement. Then got married. I have three children all three show no sign of BAV or any other cardiac issues. My Niece was diagnosed with a BAV at 2yrs old along with an aortic root issue. This was recently surgically corrected. There is no history of cardiac issues on this side of the family. I guess what I am saying is you can't stop living life. All life is some type of gamble. I for one would not know what to do without my kids. To me and my wife the risk was worth it. Just have to deal one day at a time.