To have children or not

[Sunnyside]

My husband and I are new to the HCM community, with a recent diagnosis (for my husband). We're in our mid thirties, without children, contemplating the risks involved with having children.
Since we are new to this dilemma, I'm hoping to draw on the advice of some of you out there who may have faced this significant question.
Any thoughts, both pro and con, would be greatly appreciated.
Thank you!

[Reenie]

Hi and welcome to the HCMA. To have children or not is a very personal issue. Many here have known about HCM from the time they were children themselves and have gone on to have children of their own. For myself, we didn't learn of my husband's HCM until we already had our three children. I think my choices would be the same whether we had known about HCM or not.

There is a 50/50 chance he will pass the gene on to the children. Only you can determine if that is enough to keep you from having your own or not. Some of the things I would consider are his condition now, his progression, his family history, and other such matters.

You will probably get many answers here from other posters, but it's going to be an easier thing for you just because you won't be high risk because you aren't the one with HCM. If you had it instead of your husband you would need to be followed more closely.

[Cynaburst]

If you search the archives on this message board, you will find lots of old posts on this subject. I personally was diagnosed just before my wedding. My husband and I were torn and talked to lots of people about our decision, but we ultimately decided to go forward. Now, I am on the one with HCM, not my husband, which provided additional issues for us to consider. But for you, the choice is one that you will have to make with your husband. This is very personal and only you can decide what your value system will accept.

In my case, we decided that everyone has some health problems in their family....we just happened to know what the one was in my family. We thought about adoption, egg donors, surrogates, etc., and decided that for us, it was worth the risk and that if and when the time came that my son developed HCM, we would deal with it then, but at least we already knew our enemy. There are no guarantees in this life, so you will have to decide what risks you and your husband can live with.

[LindaG]

This is something only you can decide. The chances are 50/50...are you willing to risk it? Then, on the other side, would you be happy without a child in your life. What about adoption. I could go on and on...but ultimately the painful decision is yours.

I lost a son to HCM. He did not have children...fortunately for my daughter in law in a way. What would a 30 year old widow do with a possibly sick infant? Then, maybe it wouldn't have been sick and many times she is sorry she didn't have a child. But, you make a decision and that's it...you live with it.

You see, life is funny. You can chase your tail and worry or just live it to the fullest. I never knew my son had HCM until he was 30. I lost him when he was 36. He gave me more happiness and love in those years than you can ever imagine. Am I broken hearted? Yes. Would I go back, knowing what I know, and NOT have this wonderful baby/child/man in my life? Never.

We are also blessed with a beautiful and healthy 33 year old daughter. She is unmarried, but has made the decision NOT to have children. When the time comes, she will adopt. I respect this.

I don't envy your decision. Sometimes ignorance IS bliss. Our family has no history of HCM. We never had to think about it, thank goodness.

Best wishes to you both.
LindaG

[cimdxb2]

We found out about my HCM after we our first boy. We decided to go forward and now have two boys about 18 months apart.

They are best friends. So far there are no signs of HCM, but most likely it would show up in their teen years anyway.

I can't imagine the boys w/o each other. Best friends they are.

Although HCM is a handicap (in a way), it is not a blocker to live life. It might be a different life than "normal", but it is a life none the less.

We also considered that advances in treatment for HCM might make the kids life better.

It is a tough decision for sure.

We also went down the road of genetic testing. Haven't received my results yet.

Dave

[gfox42]

Hi Sunnyside,
Welcome!

There aren't any absolutely "correct" answers to this problem, which makes it a hard one. As Linda said, it'd be easier if you were completely in the dark.

But since you aren't, I'd say that the better your understanding of HCM (and its inheritance), the better you can make choices that are comfortable to you. You'll find this board a very useful resource. You might also find it useful to talk with a counselor who helps people work their way though decisions like this.

Gordon

[thumpy]

I was diagnosed at an early age and my husband knew my health situation before we were married. The simple truth is, I have never wanted children enough to take the risk. It sounds selfish, but there are times I have trouble enough taking care of myself, let alone a child.
There are all kinds of options available. Explore them and whatever your decision, make sure it is the best for YOU!

[Lisa Salberg]

You have chosen the subject matter that has no right or wrong answer. I will however give you some food for thought. Most of the people who have posted on this message board have HCM, others or loved ones or in some cases health care providers. Some of us have made the choice to have children, others if chosen not to have children. Our choices do not make us right, they are just that choices. Even the best plans are in fact fallible. In one case I know of a woman who was unable to conceive a child and choose in vitro with a sperm donor, turned out the sperm doner had HCM and didn't know. In several cases I've worked with parents of adopted children who turn out to have HCM. In one case I'm aware of a doctor told a woman because of her HCM she should not have a child and in fact abort the child and she followed her doctor's instructions only to find out later that she could have carry the pregnancy with minimal risk.
When my sister went to her cardiologist 25 years ago and said I'm pregnant his first reaction was offering her the services of the physician who could help her with this problem and terminate the pregnancy. She went on to have two healthy children now ages 25 and 23. My own daughter was born 12 years ago, due to complications during her delivery I was advised not to do that again so she is an only child.
Every choice has possible consequences and even the best laid plans don't turn out the way we want. But when you choose to have a child the reality is you never know what's going to happen you may have a perfectly healthy child with no medical problems at all and have a profoundly ill child's with the condition you never heard of, you just don't know.

The potentially positive thing about knowing your husband has HCM is that you can to screen your child on a regular basis and you'll know what you're looking for, and then you can take care of what may need taking care of. Unfortunately you have lost the luxury of choosing to have a child without having to consider the potential implications of a genetic disorder when in reality it should be something each and every one of us think of regardless of HCM sometimes it can be rather profound when you know what you looking for. The phrase ignorance is bliss is quite true, but knowledge is power.

Regardless of your choice I hope you find this message board thought provoking , informative, and helpful.

Regards,
Lisa

[lacheim]

My motto, though said by another, it's better to live and love than to have never done either. My first husband had HCM and we knew this before we married. I never even considered not having children or the risks of our childrening inheriting the condition. We were offered genetic counseling but declinned. Little did I know I would be a widow with a 5 month old son having lost my husband to HCM at the age of 33. Would I do ANYTHING differently....NO WAY.

I have an absolutely beautiful, smart, compassionate, intelligent and witty 14 year old son who also has HCM. I have no regrets!

Life is precious, relationships can be trying, challenging and incredibly enriching regardless of how they play out or how long they last.

I have often wished for a crystal ball or a magic wand but neither exist. So, I try to remember to live in the here and now and enjoy every moment to its fullest! Somedays I am better at it than others. I would do it all over again in a HEART BEAT!

[angall]

What a very difficult decision you have before you.

I gave birth to my daughter before being disgnosed with HCM. My husband and I wanted more children and when asking cardiologist we were told "in time." After hearing "in time" for 7 + years, I became pregnant. My cardiologist wanted to abort my unborn son. NO WAY! God blessed us with our daughter and blessed us with another child. I had to be monitored very close and had a C section. We lost our son when he was 15 years young. We had 15 WONDERFUL years as a family. Would we do it again. IN A HEARTBEAT! Do we miss our son?? WE CERTAINLY DO, BUTTTTTTT, we have memoiies that fills our hearts and will be there forever. My daughter is 38 yrs young and has shown no signs of HCM.
Many diseases can be deadly. Should we live in a shell because we are afraid of disease or live a life we love with loved ones even if it is for a limited time?
Good luck with your decision.

[adpsmp]

hmmmm . . . lots of ways to look at this. Your future children could face any number of risks: down syndrome, diabetes, mental retardation, political instability, war, and on, and on, and on. Or, you could raise kids who have a huge impact on your family, your community, your world. Maybe it is your child that finds a "cure" for HCM, or cancer, or something else.

Here is what I've learned from these forums: having HCM doesn't necessarily mean you're gonna die any earlier than the date that god had planned. At least you know what to watch for, where to be concerned, how to live a full life. After hearing about lots of folks living with HCM, it wouldn't stop me from having kids in the future.

For what its worth!

Andy P

[Sunnyside]

Thanks for all the feedback on this subject. We understand that the risk of passing on the gene is 50%, but are there any relevant statistics on the odds of the gene being expressed and if so, to what degree?

The other thing we wonder about is how your children feel. How do they handle the activity limitations imposed by virtue of an HCM diagnosis?

[Midge Rollins]

Even with genetic testing, and someone as yet undiagnosed carries the HCM gene, no one can tell IF they will develop the disease and the severity of it. My children now grown with their own children, just lived normal lives knowing that every 3 years or so they would have to have an echo. I think from living with me they were not that afraid of developing it. HCM has always been a part of their lives. Yes, we are grateful they are still HCM free, but we are also grateful that they have no other diseases, that just sometime happen. Would I have them again. You bet. They have brought joy to me. (Also grandkids )

[Cynaburst]

My son is currently 6 and does NOT currently have a HCM diagnosis. However, even if he does ever end up with one, I don't think it will change his lifestyle at all.

From the time he was born, we have known it was a possibility, and I have exposed him toward activities that are fine for him. I guess it helps that he is not a born athlete, and even when given the opportunity to participate in things like soccer, he opts out of them.

Regardless, he participates in so many after school activities that he is barely ever free. He takes karate, art classes, drama classes, science enrichment classes, robots, piano, video games, etc. I honestly think that if he was told he couldn't participate in gym class, his reaction would be hooray! But we do still try to encourage him to participate in the P.E. things at his school for now. If things change, we would rethink that, but for now, he is a normal kid.

My dad has HCM, and I wasn't diagnosed until my mid 30s. I had a perfectly normal childhood (although I wasn't that into sports either), and I hope that will be my son's experience as well. There are no guarantees with anything, but I will tell you that having a child for us has been well worth it.

[Sarah]

It is more the other way around--HCM is usually expressed and much more rarely not. You can talk to Lisa (HCMA president) for more info about this.

As for how your kids feel, well, it all depends. It does help some when you raise them without letting them play varsity sports and steer them toward golf, yoga, etc. or if they are just not really athletic in the first place. However, you never know. My poor cousin is 17 and a huge bruiser of a guy. Everyone he meets asks him if he plays football or basketball and he would love to, but can't. Like everything else, you are rolling the dice. I like yoga fine. You may want to search the boards for past thread about kids and kids and sports. The most virulent conversations we've had here have been about whether to let your kids play sports or not.

It is easier on someone if they grow up with it than those who were already in the military or planning on a sports career and then suddenly had to stop.

If you REALLY want kids, then HCM shouldn't stop you. Sadly, there are countless other diseases and problems that can affect you, your husband and your future children. Having HCM doesn't protect you from having other disorders (I have two other chronic conditions, for example).

If people let the possibility of getting cancer or kidney stones or mental illness or whatever prevent them from having kids, then we'd probably have a lot more elbow room on the planet.

Personally, I knew early on that kids were not for me. I understand that some women have an overwhelming biological urge to have kids. I've never had that, thank god, because it would be so hard. I am on Coumadin now, which means I can't have a baby even if I wanted one.

For me, one factor was also the fact that I know what it is like to grow up with a parent that is sick and in the hospital a lot. It is hard on your kids when they don't know what is going on. If you choose to have kids, don't forget that you will need to talk to them about your husband's health as it affects them--maybe dad can't play football with them or give them piggy back rides. You will need to be very open and honest with them or you risk resentment and anger and fear. Pretending that nothing is wrong with dad is much worse than the truth.

There is no right choice, there is only what will make you both happy and fulfilled. This is not a choice you can make over night.

If you only had today, how would you spend it?

best wishes,

Sarah

[Reenie]

If the gene is passed to your offspring I think there's like a 90-95% chance of them developing HCM, if I understand it correctly. You can usually (though not always) look to family history to get a glimpse of the progression of disease within a family. If many in your family are really sick with HCM, the chances are good your children will be too, but if you have a form with few symptoms your chances are they'll get that type of progression. Obviously that method of prediction isn't infallible, but sometimes it's the best we have.

As far as how children feel and how much activity limitation they have, it all depends on the kid. If they're really into athletics then they might have to curtail those activities on a competitive level. However, they can still be active. They can walk the dog, play with friends, go skating or swimming. There are so many other things kids can do besides play competitive sports. As I'm typing this my 12 year old son and I are talking about this. He said his reaction to being diagnosed tomorrow would be, "Oh darn. I'm sorry I have this but I'm happy nothing bad has happened before now. I wouldn't be freaked and I would be glad I don't have other things some people have like being in a wheelchair all the time. I know I would have to take medicine and be careful but life goes on."

[Srmartinson]

Like everyone has said, this is very personal. I do find it so positive that you have taken the initiative and are being pro-active with your research. I have to admit, I never did.

In my case, I was 26 and 30 years old when I had my daughters. I wouldn't change having them! Even now with all the negatives I have gone through this past three/four years (with 6 surgeries, three ICDs, two lead extraction surgeries, etc). Yes, I am nervous about their future with the 50/50% chance of them having HCM but since I am now finally being pro-active (like you) I know that knowledge is power and that early symptoms will be detected and either confirmed or denied with clinical studies.

I wish you the best in your decision.

[adubhansen]

This is my first time posting. I have been married to my husband for 3 years and he has HCM, and has a pacemaker/defibrillator. He has expressed that he feels very lucky that his situation wasn't worse, and that he does not want to chance passing this disease along to our children.

We’ve recently met with a genetic counselor and are trying to locate information on costs and labs that would perform Preimplantation Genetic Diagnosis and then IVF. My husband’s family was studied in the past and we do know where and what the mutation is, so this should help the process along.

Basically, I would really appreciate any information or experience anyone has with in vitro. Was it successful? Affordable?

Thanks for your help.

-Ashley

[Cynaburst]

Hi Ashley,

Welcome to the HCMA. Your question is one that I believe you have raised for the first time here on this message board.

I had a couple of discussions at the annual meeting in June where I learned that in vitro insemination to specifically chose an embryo without the HCM gene was possible if the specific HCM gene had already been identified. I was told that it is very expensive, and has only been done a couple of times, but that it is possible.

So, my friend, you are pretty much on the cutting edge of technology here. I think that you should call the office at 973-983-7429 and see if they can point you in the right direction as far as hooking you up with someone else who can give you more info. And, you might want to speak to a fertility specialist about how the i.v. process works and how much it costs.

I know that it can be a burdensome process, and is not without its own complications, but it is certainly worth investigating.

Best of luck, and please do let us know what you find out.

[MariaB]

Andy P. is RIGHT ON !!!
peace
Mariab

[mandksiders]

I am coming in here very late on this topic, but I was just diagnosed Thursday with HCM. However, I grew up with a mom who had it, a grandpa who had it (he died when I was six though), so it has always been a constant in my life. For one, I am thrilled my mom had my brother and I, because obviously I wouldn't be here. I grew up knowing (even before I knew my gene positive status) that I could possibly develop HCM, I also knew when it came to me having children, there was a chance my kids could have it as well.

When I got married and had children, we honestly didn't think twice about it- but this was before my diagnosis and any type of gene testing. I just figured I would raise my children having regular echos, just like I had been- therefore in one way or another, HCM would always be a part of their lives just like it had been in mine- regardless of if they were ever diagnosed with HCM or not, it would be something that they knew would be a possibility in their lives.

Now I have my two boys and I have HCM. I look at my boys and while my diagnosis makes it VERY real to me that they could indeed develop HCM (so far, so good- but they are only four and six) but I wouldn't change having them at all. I look at my four year old with his big dark brown eyes and his colics all over his head and I watch him play and there is no doubt in my mind that I did the right thing. I look at my six year old with his glasses and his sense of humor and I don't think twice that I could have passed this to him. I can't imagine life without them- HCM chances or not.

The thing I am learning about HCM is that there is so much that can be done now to treat it and help control it and if God forbid, my boys do have it later on, then who knows what they could possibly do for it by then? My mom was diagnosed almost 40 years ago when there was one medicine to treat it- look at how many medicine choices and other options there are now. How far will they come in the next 10 to 20 years in treating this condition? No one knows, but I know researchers are working extremely hard to continue to add to our options for treating this and perhaps one day, preventing it. The majority of people with HCM live long and normal lives after diagnosis. I would rather my boys have HCM then thousands of other diseases that can't be controlled or treated with medication, surgery, etc.

I also wanted to add the one person who put the possibility of my boys getting this, into a more positive light. I spoke to Dr. Ho in Boston shortly after I found out my positive gene status and before my diagnosis. She said to me, "Kaye, your boys ONLY have a 50% chance of having this condition." for some reason when she said ONLY, it really made a big difference. There is a 50% chance they WON'T get this. My mom has two kids, one has it and one doesn't.

So I wouldn't change having my kids at all.

[cuore80]

no one knows how our life will be, nobody can have the possibility of seeing the future.
I personally do not know a person without any health issue.
the real problem is that we think we are perfect, that our body is a perfect machine.
Im sorry to disappoint you but THIS IS NOT TRUE.
Life can change at any seconds.
we know we have this condition, maybe in 100 years it would be possible to know other disease in advance, even now with a gene test its possible to know when you can eventually develop a cancer-
can we leave like that? with fear? ,,,we have to consider us lucky cause no we know that we have HCM and there are many tretments availeble to leave a normal life.
having children? my answer its yes, why not?
not because you know that your children can develop hcm? and what about the other disease? so we should stop to make children?
maybe in the future there will be the possibility to make a perfect child without any risk, perfect as a machine. I do not know it would be nice-
does we live in a perfect world?
im sorry to disappoint you, but the answer is no indeed!

regards

Valerio.

[adubhansen]

I don't think anyone asked a question that can be answered as simply as "no." I also don't think that trying to avoid a specific disease is anywhere close to trying to create a machine.

Each person considering having a child should do whatever they can to ensure that they are healthy, and whether or not you believe that using science to avoid HCM is overdoing it, it is an option that some may opt for because of their personal experience with the disease.

My husband would not be here if his mother had chosen not to have children. I understand why you should not let this disease prohibit you from living a fulfilled life, but if there are options to ensure that your baby is healthy, why the heck wouldn't you want to know more about it?

[Cynaburst]

Ashley - I am with you. If I had had the opportunity to do what you are looking into doing now, I would have grabbed onto it. The technology was not available when I got pregnant, so my husband and I decided to take our chances. I agree with everyone here who says that they don't have any regrets about having kids, and if my son gets HCM, I will still say that I have no regrets. However, if I would have had the opportunity to KNOW that my son wouldn't develop HCM, I would have absolutely at least looked into it and I would have made an informed decision about whether it was worth it, as I am sure you will as well.

[cuore80]

Ashley - I am with you. If I had had the opportunity to do what you are looking into doing now, I would have grabbed onto it. The technology was not available when I got pregnant, so my husband and I decided to take our chances. I agree with everyone here who says that they don't have any regrets about having kids, and if my son gets HCM, I will still say that I have no regrets. However, if I would have had the opportunity to KNOW that my son wouldn't develop HCM, I would have absolutely at least looked into it and I would have made an informed decision about whether it was worth it, as I am sure you will as well.

im not saying that its wrong to chek the possibility that can help you to avoid that your child develop the disease.
when Im talking about "making a machine" im refering to "EUGENETIC", I mean, we know there are unfotrunately several defects and disease, so maybe in the future we will able to modify the dna for making perfect individuals. there are several debates around this argument.
So my conclusion is the following:
there are many defects that our child can eventually develop, and hcm rapresent only one that fortunately we know in advance, and we also know that there is even the possibility to leave an active and normal life.
so why not?

Valerio

[Lisa Salberg]

Every few months this topic comes up again and is "re packaged" with some new twist. It is an emotional issue that brings out a great deal of passion. I will try to add to the conversation.
The promise of "personalized medicine" is to lead to better treatment of disease specific to the individual - it also holds the promise of stopping disease in many ways. One way to stop disease is at the very begining. I had hoped that when I gave my first sample of blood for genetic testing back in 1989 that they would find a way that my future children would not have to have HCM at all... that did not happen.. Becca was born in 1995 with the HCM gene and now has HCM. If I could have taken part in a procedure to stop the gene and ensure her life was HCM free - I would have taken that chance and tried.
Those of us who have been at this a while have been a part of ensuring our children have the chance of having children free of HCM or who can limit the presentation of the condition by means of medical intervention early. We are all still learning and we have a long way to go.

Some may opt for adoption, sperm or egg donation... but let me remind you of a few stories here - one man donated sperm and 22 children were created--- then they found out he had HCM --11 of those children now are gene positive and many have signs of HCM. Further a number of you are adopted, simply proving you never know what you re going to get with these methods of family planning. So if you really want your best chance to stop HCM it does appear that using technology to assist may be the way of the future.

I ask you all this - when it comes to the question of to have children or not--- or how to be open minded and remember this is the most person of choice, support each other even if you may have choosen a different path.

Best to all,
Lisa

[mandksiders]

Chiming in again....my response was to the OP, not the woman who is looking at IVF and changing genetic makeup. It's too late for me to do this with my boys and at the time we were contemplating kids, it never crossed our minds- I have no idea if it was available seven years ago or not, but I am sure if it were, we wouldn't have been able to afford it. Besides, at the time I was young and never thought I would have HCM, even though I knew it was a possibility, but I figured I was home free from the condition since I hadn't developed it early like my mom. So, HCM really never came into play when we decided to have kids.

My husband and I had recently mulled over the thought of a third baby- very briefly. The next day I found out I carried the HCM gene in our family, and I realized that since I do indeed have the gene, the reality of having kids with HCM is there- like I mentioned before, it made it real for me. Now with my diagnosis (wow, in a month's time my life has sure changed!) I think pg would be difficult on my heart, so we won't do it for sure. But the other reason? Even though I wouldn't change having my boys for ANYTHING and I know HCM is a liveable condition, I don't want to bring another child into the world with the chance of having it. Sure, it didn't stop me before and if I were in this same situation and didn't have kids (and was younger), I would just go ahead and have children regardless. But, since I have two children and I know they have a 50% chance of having it, selfishly for me, I don't want to bring another child into the world worrying if he or she will have the gene and have HCM. They can do so much now for it and I am incredibly hopeful that by the time my boys are more mature, there will be much more that can be done.

However, if someone came to me, said my heart would be fine with a pg and that they could ensure that my child won't have HCM by altering the genetic makeup, I think we would seriously consider a third child. Just knowing he or she wouldn't continue on with a gene that could be stopped and thus, perhaps eliminate it from being constantly passed down from generation to generation...we would do it.

I feel like I am talking in circles here, but in no way am I judging the woman who is considering doing the IVF at all. I think it is fantastic that she wants to stop the gene in their family and avoid having a child with HCM. Of course that doesn't mean there aren't other things in her family genetic makeup that could be passed down, but honestly, if you could stop your child from having HCM and you can afford to do it- who wouldn't?

It's too late for my family and I wouldn't change having them at all, but if my boys are diagnosed and some day want children, I am willing to bet that they would choose to do something like this. How fantastic would it be if we could finally end HCM in our family by doing that?

Good luck to you.