Decision to Have Kids

[rbowers]

My husband found out a year ago at 28 that he has HCM. It has been a tough year but he is doing ok. His prognosis is uncertain at this point.

We are currently trying to determine how this impacts our decision to start a family. Do we try to have kids with this known risk? Adoption (which has unknown risks)?

There are of course no certainties in life and as a parent you need to be ready for anything and of course, no one can predict the future. However, having seen what my husband has had to go through I do wrestle with knowing this and trying to make the right decision.

I was looking for advice from anyone who has also struggled with this decision before.

Thanks

[Cynaburst]

Re: Decision to Have Kids

I too struggled with this decision, and in the end, chose to go forward knowing that my son had a 50% chance of having the disease. My thoughts were that the disease had not really affected me up to that time. (Much different now) and that if we adopted, or chose some other alternative, then we wouldn't know what diseases or conditions might come our way, and at least we knew HCM well and could prepare to deal with it.

Today, there are options available to you that were not available to me then. You can do preimplantation genetic testing of an embryo before it is implanted (if the HCM gene in the affected parent has been identified). This will ensure that the child won't have the HCM gene and will only have the same risk of 1 in 500 of having HCM as anyone in the general population.

This is more expensive, and not covered by insurance, and requires jumping through some extra hoops, but it is an option available to you.

Please call the office for more details if you are interested.

[sydelle]

Re: Decision to Have Kids

This is indeed a really hard decision. I had our daughter before I knew I had HCM. She seems to have inherited this HCM from me which does make me sad. But I can't imagine my life without her. Perhaps your doctor can recommend genetic counseling. I know that each case of HCM is different in every person. But the decision is yours.

[Sharlene]

Re: Decision to Have Kids

I had 3 daughters not knowing that I had HCM. Only one has been diagnosed and it was because of her symptoms and diagnosis that I ever knew such a condition existed and that I had it and passed it to her! I can hardly remember my life before children and if I had it to do again, but this time knowing I had HCM, I would probably choose to have children, all else remaining the same! Every pregnancy brings the same hopes to HCM and non-HCM parents- that the baby is born healthy with all the appropriate parts working as they should. My younger 2 daughters do not show signs of HCM and for this I am glad, but they may have other issues that no one is yet aware of. I choose not to worry about it, as their bodies are what they are, and worrying does not change things.

May you make the decision that works best for you!

[Eileen2345]

Re: Decision to Have Kids

Hi RBowers,

Some adoption agencies will not let you adopt a child if you have a life threatening disease or are chronically ill.

You can adopt a child with a disease, but the adoptive parent cannot be at risk for dying early or be too unhealthy to care for a child.


My brother was in bad shape with his HCM and he chose not to have children. His wife understood. However, I had 2 children, they are now ages 11 and 14. My husband divorced me over 4 years ago. They live with their father because he has the house. I do not get to see my kids very often even though I live in an apartment down the street because I am so tired after work. I usually see them for a little while on my days off work and I talk with them on the phone too.
(*Edited: I was diagnosed with HCM when I was pregnant with my first child. I asked my doctors about having another child and the risks of passing HCM on to them. My doctors did not give any real information at that time.)

At this time, I have some degree of heart failure. I know that I could not raise my children by myself without help. I do not have the energy. And I certainly could not care for small children.

If you do have children, please understand that there are going to be days when your husband is going to be really tired and you will have to do the work caring for the children.
Many of us with HCM (not all, but many) have our good days and our not so good days.


My advise is to find out as much information as you can and communicate really well.

All the best to you and your husband.

[swensonrc]

Re: Decision to Have Kids

That is a tough decision. I had my daughter before I knew I had HCM and I had my son shortly after I was diagnosed and before I knew much about it. Thinking about my symptoms and the lifestyle changes I have had to make, I believe I would of still had children. My daughter is 13 and was just diagnosed two weeks ago, so now she is having to make some changes. The affects of her disease on her is still yet to be seen. It is what it is and I will do all I can for her to live as close to a normal life as possible. Lots of prayer!
Good Luck!

[mandksiders]

Re: Decision to Have Kids

I was diagnosed with HCM after I had both of my boys, now ages almost six (on Wednesday) and almost eight. I had no idea I had HCM when my husband and I decided to get pregnant- though because of family history I knew I had a 50% chance of inheriting it from my mom. I just never thought it would really happen to me. =)

Had there been someone that said to me over eight years ago that I had HCM, would I have changed my mind about having kids even knowing they each had a 50% chance of inheriting the gene that causes HCM? It's doubtful...Had someone told me eight years ago that we could remove the HCM gene by pre-implantation, thus ensuring that neither of my boys would inherit my gene, would I have done that? Most likely yes...had it been affordable to us. If it hadn't have been affordable, I am sure I would have taken the chance and had my boys.

I have to say this..nothing has changed for me as far as parenting with HCM goes. I am active, I play with my boys, we go bike riding, swimming, etc...I do everything with them that I did prior to my diagnosis two years ago. HCM hasn't prevented me from being able to parent my children. I grew up with a mom who had HCM with many symptoms and had a myectomy in the early 80's, but the thing is, for as sick as she was with HCM and for as many symptoms as she had with it, I never knew she didn't feel well. She never let her children see her struggle with the disease and I respect her for that. It's taught me a lot about how I want to live with this condition and to parent my boys. I am blessed enough to pretty symptom free as of right now with my HCM though. I truly think depending on the severity of your husband's symptoms with HCM, that his parenting shouldn't be affected too much by it.....

I can't imagine not having had my children, even knowing everything I do about my diagnosis, their genetic status, etc. I do know they are making gains in the treatment of this condition and I continue to hold hope that should my children develop it, there will be even better treatments and prognosis for them by that time.

Like I said, if money was no object and if I had known then what I know now about pre-implantation, I would have chosen that route...but if money had been an object, I still would have had my children.

Good luck with your choice!
-Kaye

[Bob in Texas]

Re: Decision to Have Kids

This is one of those questions I have contemplated since being diagnosed a year ago. Personally, if I would have known prior to being married, I believe I would have chosen not to have kids. I have two boys, 14 & 16, who will be tested in July at a HCM Center. I have been through alot in the last year, ICD, Myectomy and now pending a transplant review. I may be one of the rare cases, but if this happened before I was married there is no way in the world, I would of had kids. What has happened to me in the last year is trivial my main concern since being dignosed, everyday, is I may have passsed this on to my children. I did gentic testing and it came back, I may possibly have a gene which has not been proven to cause HCM. There is too much about this disase which is unkown.

Peace,

Bob

[Joe Deltatd]

Re: Decision to Have Kids

Although I've been diagnosed since 1989, my suburban cardiologist under-educated me and under-treated me about HCM. I didn't know it was as dangerous as it is (I was ten times more fixated on the cardiovascular issues that run in my family.) or that my daughter has a 50/50 chance of getting it`until this year. What's done is done -- all I can do is pray she didn't get the gene (we did gene testing and I'm in the % of HCM patients where the gene I have tucked away is not yet identifeable, so we just won't know). So, I will literally just pray, and make sure she knows everything she needs to know. Some people have had very, very rough lives with HCM, whose stories I've heard her even in the short time I've been reading. My road has not been nearly as rough, and I've lived a good 53 years, and I don't know how many more: I am hoping a great many. I am hoping that even if my daughter get it, she'll be more aware of it (she's already had an echo at Boston Children's as a baseline, with no hypertrophy) and perhaps there will be some advances. If not, perhaps I am giving her a disease that might shorten her life or make her life harder, but a life very worth living, I think. What else can I choose to believe? Like all belief and faiths, this is a choice -- I choose to believe she will be all right even if she inherits HCM from me.

[Toogoofy317]

Re: Decision to Have Kids

I was diagnosed with my HCM at 21 and it has progressed relatively fast for me. My doctors from the beginning advised against having a child due to my heart failure. It has really interferred with daily living so at the age of 27 while getting an ovarian cyst removed, I chose to have tubal ligation as well. I would not wish this disease on my worst enemy and definatly not on my own child. If I do get married and decide on children I hope adoption would be an option but hearing what Eileen said I guess that is not an option either since I'm quite sick.

It's a hard choice and is different for everyone.

Mary

[abilks]

Re: Decision to Have Kids

I was diagnosed at the age of 14 and implanted with an ICD a few weeks later. I was told from the beginning it would be very dangerous to have children (my health) even though I was asymptomatic at the time. My grandfather and mother died at a very early age of the disease, so I knew the risk of passing it to the next generation. When I met my husband, we talked about it and decided adoption was the best way to go in our case. Of course, I mourned knowing I would never have biological children. I think everyone wants to have children of their own flesh and blood, but we knew for my health and the health of our future children, adoption was the way we were going to have a family. We now have two beautiful children, twins, that are 3 and the joy of our lives. Of course, adoption is not without its risks. Our children have some history of mental health issues in their biological family, which we will have to worry about in the future. But, I feel these two were meant to be with us and had I not had this heart condition, they would not be in our lives. I've been lucky that I've not had horrible complications (some atrial flutter, which caused my defibrillator to fire), so I can keep up with them for the most part. We did what we thought best for our situation and I'm sure you will too.

[elanor]

Re: Decision to Have Kids

I think this is the most difficult choice for people like us.
My HCM comes from my father, and he still feels guilty. He's completely asymptomatic, instead I've severe symptoms. I don't know which is the best choice, but this is my problem: my father didn't know anything about HCM, instead I KNOW and I agree with Mary, I would not wish this disease on my worst enemy. So what can I do? I'm Italian, and in Italy adoption is nearly impossible for parents with severe disease.
I've written this answer because I REALLY don't know what to do and I often discuss about it with my boyfriend...
Elena

[mbcube]

Re: Decision to Have Kids

I'm adopted and I have HCM. I likely got it from my dad side as he died @ 49 of a cardiac event. From my mom's side I've got a genetic link for CMT (Charcot-Marie-Tooth) so all in all my gene pool is pretty darn shallow.

I have 3 boys (16, 20 & 24) all negative, but in all likelyhood, one of them has HCM. I was told by a genetic counselor that If I don't present any nerve issues by 40, that they will escape the CMT. I have some sensitivity issues but thats it. I hoping they don't have it.

Would I have had kids, knowing what I know now? Heck yes! Life is a Cr-p shoot. My HCM didn't bother me till late in life, I would hope that they would live life to its fullest until they couldn't do anymore. Thats what life is for, to be enjoyed.

We never know what the future brings us. I only know what the past has brought me, and having these boys (with illness or not) have giving me joy that can't be bought, measured, or judged. The pregnancies were not fun, The first one tested high for downs (and didn't have it). The second one was thought to be multiples (luckily, we escaped that one!) and the last one did a one and half gainer in a tucked position and was a week late so he came into this world cesarean. He was the biggest at 10.8 lbs. the others were just over 10.

Do it again? yeah, Their mom might have another perspective though.

[hocmdoug]

Re: Decision to Have Kids

I think you also have to consider if you have other compounding health issues as well. Would you be able to give your "all" for to your children?

For myself, the answer was an emphatic "NO!" I had another major issue that would have made parenting an ordeal for me---and the children. I most definitely would not have been the kind of giving person children would need.

My wife and I had to make that decision two decades before we found out about my having HCM. Had we known about my health conditions concurrently, it would have made the issue easier to decide.

Yes, it has been hard sometimes not having had a family. I think my wife and I missed out on something. I feel sometimes like she gave up a lot to stay with me.

If I had HCM alone, would I have opted to have a family? Yes.