Having kids...

[kayla71]

The other night, I asked my mom if she thought it was possible for me to ever have kids.. Ofcourse she's not a doctor so she wouldn't know.. My parents keep telling me to never have kids. I don't understand why it would be so bad if I had kids.. Would it hurt my heart that bad?? But I thought since I never really had any bad problems with my heart then it would be okay...

But not that I'm planning on having kids any time soon.. I was just wondering if any one knew if its a good idea to have kids with cardiomyopathy...?

[Cynaburst]

Most women with HCM can have children.

Obviously this is an individual decision that you and your partner will have to make at the time. You have quite a while to think about this! The one major issue that you have to consider is that there is a 50% chance that any child you have will also have HCM. That being said, you are so young that by the time you are ready, they may have a way to do genetic testing/prenatal counseling so that you can avoid this. Who knows what the future will hold in terms of genetics and HCM? While this sort of planning is not possible now, it certainly seems like it is on the horizon.

I had a baby, a normal pregnancy and delivery and many others on this board have done the same. You will have to plan a little more than the average woman -- it is best to discuss in advance with your cardiologist and OB, and you might need to consult with a high risk pregnancy specialist, but it is certainly possible.

Don't give up yet! Who knows what the future holds.

[angall]

Hi
I was debating if I was going to reply to this topic because people have different opinions about topics and this topic is touchy.

I gave birth to my daughter in 1970. She was and still is a healthy (as far as HCM is concerned) beautiful person. I gave birth to my son in 1978. He had minor problems from birth (colic, roseyola, etc.). I lost him when he was 15 due to HCM.
As you can see one of my children inherited HCM and the other did not.
If I were asked if I would have children again my answer would be YES! I have so many wonderful memories of my two children both with activities together and some they did from their own interests. In my opinion if a person that had HCM and his/her partner decide to have children, make sure he/she is being treated by a HCM specialist and an obstatrian that is in close contact with the specialist. The two must work hand and hand very close. And of course you must know your limitaions and take care of yourself according to both physicians.
I wish you luck when the time comes for you to make this decision. Birth is a miracle and a gift from God.

[LindaG]

No one in our families (that we know of) had or has HCM. I had one child with HCM and one who is ok. When we lost our son, I wondered what I would have done if I knew. Now, almost a year later, I can tell you ... selfishly I would have done it again. I had a son who was an incredible person. He was the kind of son every mother dreams of having. But, for him and his wife....well, I don't know.

My daughter, who is single, said she will not have children. To quote her, "This thing ends here." She said if she ever marries, she will adopt. She is a woman of strong convictions, and I think she will stick to this decision.
Basically, it's a decision that's purely up to you and your heart.

Good luck and stay healthy. Don't worry about this yet.
Linda G

[Sarah]

I know my mom blames herself for 2 of her 4 kids having HCM. Of course, she didn't know that what she had was genetic when she had us and it is not her fault in any way. But she still feels terrible and it is very painful to see your kids be hospitalized and sick and take medications and so on.

And yes, most women with HCM can have kids, but pregnancy is very stressful on the heart and you can worsen your health after having kids. My mom, for example, never went into atrial fibrillation until after she had me and got a little worse after each kid. But someone women seem to be ok, too. There is really no way to know but to talk to your doctor when it is an issue.

The MOST important things to know are that: the decision is yours, that you will need to make it with your doctor, that you have a LONG time before you have to make a decision, you can't know what your situation/health will be at that time and that your parents only want the best for you. AND--adoption is always an option.

You could also ask them to just stop mentioning it since, at 16, it just isn't something you should be worried about.

hang in there,

S

[Lisa Salberg]

I think it is a very normal and healthy question to ask yourself as a young person - male or female - living with diagnosed HCM. I will echo Sarah in saying this is YOUR choice and you have time to make this choice and in the end you will do what is best for you and your family (meaning your spouse and you).
There are many options open to you and many more coming - there well may be a time when we can make genetic choices during conception to rule out passing down the gene for HCM..this is not practical today due to technology but when it is your time it may well be a reality. As for YOUR health that is a completely seperate set of concerns and ones that must be discussed with a highly qualified HCM specialist who can help you know the potential risks, plan for them or choose not do deal with it.

Personally I have a wonderful daughter who as you may have read has HCM too. While I did hope and pray that she did not have HCM, that was not to be. She is fine, she is cared for and she is a typical 11 year old girl - albeit with an ICD, but otherwise very normal! I did run into a problem during delivery and my blood pressure crashed, lets just say there were a few moments of drama - not that I would know because I was out...but all is well now. I was advised not to have a second child due to my response... but that is fine I hit perfection the first time ;-)

Would I do it again... heck yes. That is my story please do share yours with our young friends and help them think about their options. I know some of you have adopted or are adopted yourselves, maybe you could share your views on adoption with the board.
Thanks!

Lisa

[Reenie]

I have three kids but my husband has HCM, not me. My kids are at risk to have inherited HCM but so far none of them have shown any signs of it. We didn't know HCM existed when we had our kids but I still would've had them. We did think of adopting a child several years ago but at the time it wasn't practical for where we were living so we only have our three who are genetically ours. I wouldn't change a thing about having my kids.

Reenie

[karen cicconetti]

You have heard from some pretty special people who would never give you bad infomation. When I got pregnant every one was so scared and a little angry because they were worried about me. I to was told not to have children, but here I was pregnant and the person I wanted to tell first was my mom and she was the angriest. Well I had a miscarrage six weeks later everyone was sad for me but somewhat relieved(I think). Well if you knew me you knew I wanted a child and within four weeks after my miscarrage I was pregnant again God wanted this child born. I had no problems until delivery but everything worked out. My mom told my husband if I got pregnant again she would kill him. I never was able to have any more I did try but God gave me Christopher and thats all I needed. Today he is 17 has HCM is graduating high school June 2nd and none of us would have changed a thing. So follow your heart this is your choice!! find great doctors to talk to and follow you when the time comes, and think about us HCM moms on mothers day.


Karen Cicconetti

[macbeth]

My wife had HCM, and 2 of our 3 children have it.

Looking back (after 27 years), even knowing what we do now, we would have children again. When I look at the quality of their lives, and the things that they do, it would be hard to say having them was wrong.

Having children can make HCM worse. There is no question that her three pregnancies complicated her condition. She knew this, but as long as the babies weren't at risk, she was willing to have them - she really loved children. And after they were born, she never regretted her decision.

I have a daughter who is 19 who has HCM. She has decided that she won't hesitate to have children when that time comes, so long as her cardiologist says she can handle the pregnancy. She says she will not let he disease control her life and, if the kids will be no worse than her, she'll have them.

[Farmerdancow]

I survived a cardiac arrest at the beginning of March due to HCM, which my family and I did not know it was in our family. I thank God everyday for keeping me here. I am only 19, but before my diagnosis I knew that I wanted to have kids someday, my grandpa and my dad had 3 boys each, so naturally I want 3 boys. But now I am scared because I know that I can pass this thing on. It is also difficult with relationships because I don't know how to tell this to girls, but I'm trying. I often wonder why God kept me here, there must be a reason. But it goes against natural selection in my views, survival of the fittest, there is no reason known to me that I shouldn't be here today. But He kept me here, so I'm going to live out my life as He intends, with or without children. Who knows, maybe me or my children will be the ones to find out how to get the HCM gene out...:)

[LindaG]

Farmerdancow brings up an interesting point. However, our BEING HERE is not just about having children. None of us know WHY we're here. I can tell you that my son did not have children. He was only married 2 1/2 years when he passed away. But, he had a wonderful life and was a kind, giving, and loving person. When I meet his friends and cousins--with whom he was close--I can see how Mark's living and dying affected them in such a positive way. Two of them told me last week, that they learned so much from Mark about life and love. He left a beautiful legacy.
So, it's not all about kids...it's about humanity. You have to make the most of each minute, because none of us -- HCM or not -- is guaranteed tomorrow.
Take care.
Linda G

[Linda]

Welcome, Farmerdancow - I hope you will start a new thread to introduce yourself. Linda

[MJAG153]

kayla,

I'm 24 now & planning to have kids in the next few years. After being diagnosed with HCM 3 months ago a big concern of mine was pregnancy & passing on the gene. My understanding is that pregnancy should be planned & discussed with your doctor. There was a study done in Italy (i think) that showed that HCM only increased the risk in pregnancy slightly & that the only deaths that occured were mothers who had been advised by their doctors NOT to have children. It is something you will have to discuss with your doctor & weigh the risks. As to passing it on- that is something you & your partner will probably have to decide on. My partner & I have decided that we will take the 50/50 risk. Good luck & try not to let this stuff consume your thoughts. You have time & see what your doctors opinion is. My own parents have a tendency to freak out b/c they make assumptions instead of looking at the facts. They worry about me more then I do! Not to say yours are doing that but parents go a little crazy with their kids.(it's b/c they love us so much) I'm sure I'll do the same with my own:)

Take care,
Jo

[Maddy]

after much thought i am going to chime in here.........
i have hcm........as do two of my sisters...one has already died.......the other has a more severe case than my own...........
i don't even know where to begin...........i went through ivf (in vitro fertilization) in 06.......(my husband is allergic to his own semen) so this was our only shot of getting pregnant..........it failed............
we agreed on adoption............i was diagnosed............my husband withdrew and subsequently shut down any and all taks of adoption for fear of adopting and loving a child that may also have an unknown genetic condition that may result in death..........not that we wouldn't love the child anyway....my husband can be ruled by his fear.......needless to say this caused a strain on our marriage......i was not ready to give up on being a mother........i consulted my my hcm specialists and he said that i could handle a pregnancy..........so i started my research...........
to make a long story short i just returned home on wed. after a 12,000 mile round trip to the czech republic.............while there i underwent an embryo transfer.............the eggs and sperm were donated, fertilized and placed in my uterus...........i won't know if it was successful until may 14th.........
they do genetic testing on the donors and on the eggs before fertilization......this eased my husbands mind and helped him to to accept that i was going thru with this process...........i would be happy with any child..........
i thought i had a point but it seems to have escaped me...........
maybe just be sure to enlighten your partner on your condition before things get to serious...........in my case i was already married and had to allow my partner a say in how we became parents...........and it has not been an easy journey.............i love him deeply and dearly but have learned that i am much more of a risk taker than he is...........
i am at the end of this process........if i am pregant i will be so incredibly grateful.....if i am not i will really have to accept it as part of my fate and find a way to move on with my life without children...........which will be the hardest thing i could ever imagine..............
f.y.i. my living sister has 3 children who are all hcm free.......my sister that died has one son who has yet to be tested...SHOCKING i know..but its a long story involing his father...........he thinks its best not to know......SHOCKING i know..........but myself and others are persistently working on changing this....i must also say that 3 of my mothers (had hcm but died of a brain tumor) 4 kids have/had hcm.....
i hope anyone who takes the time to read this long entry will also pray that my treatment will be successful and that i am pregnant as i type this.........thank you
maddy

[Reenie]

Maddy, you'll be in my thoughts as you continue this journey. I know the next week or so will be some of the longest in your life.

Another issue in deciding for or against carrying children when you have HCM is what it does to your own body, not just whether or not you will pass the gene to your child. It depends on your own health, but some women find HCM makes their HCM much worse with pregnancy, others report little or no change. The only other thing I can think of at the moment is having to do with anesthesia during delivery. Some types (notably epidurals) have a tendency to cause HCM'ers problems because they can make blood pressure drop rapidly. Some here have had great success with epidurals, others have had considerable problems. I don't think there is a blanket answer. Know your body and make sure your doctors understand HCM and what possibilities can happen. Be safe and enjoy your kids if you choose to have them!

Reenie

[nzelich]

Although neither my partner of 8 years or I feel the necessity to have kids, we've decided that if that ever changes we will choose to adopt. We've felt that way even before my diagnosis. My having HCM really seals the deal for me though. Although I'm not symptomatic and live a normal lifestyle, I hate having the disease. I never go a day without thinking about it, while I'd rather not. I'd hate to pass that fear onto someone else. There are plenty of healthy unwanted children out there.

Nick

[kayla71]

Thank you everyone for your thoughts!

You all are right, I do have a while to think about this. I just hate seeing both of my sisters so happy with their kids, and thinking that I may not get a chance to have that. But I thought since my hcm problem is not bad at all that it wouldn't effect me, but who knows?

But I will be sure to ask my cardiologist when I go back. She may say I can't have kids, and if she does I don't know what I'll do. =/


Once again, thank you everyone!

[Cynaburst]

Kayla - You can ask your doctor now what she thinks, but she won't be able to predict how your health situation will be in 10 years, and additionally, what the state of medical science will be in at that time. Furthermore, many doctors don't know that much about HCM, and are not qualified to answer. I know that the cardiologist I was seeing at the time I had my son thought he knew enough about HCM, but in hindsight, did not. That is why it is so important to consult with an HCM specialist.

If I were you, I would just keep it in your mind that in most cases, it IS possible to have kids with HCM, and that it is a bridge you and your partner will cross when you come to it with the information that is available to you at that time.

DON'T SWEAT IT!

[gayle]

The important thing is to discuss it with your HCM specialist. I had one son before I knew I had this. I was actually about to start trying for my second child when it was discovered. My family Dr said please hold off until I found a cardiologist. The first cardiologist I went to told me I couldnt live through a pregnancy ( which I doubted since I had already done it one). I found a specialist and after checking me out he said it would be okay for me to have another. I was treated as a high risk pregnancy, which annoyed me, but my pregnancy was perfect, no problems. Now on the down side I never really had symptoms before my last pregnancy and now I have some chest pain, and light headedness. I dont know if it was related to the pregnancy or just me and my heart getting older. Truthfully if I had known my symptoms would increase some, I would have still had him. He is a wonderful, busy, little 22 month old now and our life would be dull without him. Now I had always said I would have 3 and I am now thinking for the sake of my health, and so I know my boys will have me around, I may stop at 2. So far my 5 year old and my little guy have no signs of HCM, I pray it stays that way.
Basically you know your body and your hearts desire. Work closely with your Dr's and when the time is right do what is best for you.

[cynthia]

Kayla,

I think everyone has said it all. We all have different severities of HCM and HCM has presented itself at different ages. Some were symptomatic at a very young age...others not until mid-life. When the time comes and you and your husband discuss having children, I would obviously discuss this with your cardiologist also. I can only speak for myself. I found out I had HCM at about age 28. I started having very brief, short lived palpitations and was put on a beta blocker and felt absolutely fine..never felt anything while on this medication. I got pregnant at age 40 and still felt fine...no symptoms, the med took care of the palpitations and didn't have a single one the entire pregnancy. Due to my age, my obstetrician monitored me closely. My cardiologist never said I couldn't or shouldn't have children. The pregnancy was fine and have a very healthy 13 yr. old boy. He has been screened once for HCM and so far, doesn't have any concrete evidence. I didn't start having more symptoms until I was 49. When the time comes, then you can all sit down and discuss it..I wouldn't worry about it now...have fun..you are still so young! :)

[meka_521]

I delivery my son in May 2005, He is a healthy boy with a heart mumur. The doctors scheduled him for a echo when he was 2 weeks and again on June 28, 2007. I'm praying that the hole in his heart will close and that I will not pass the heart disease to him. He was my third pregnancy, the first was a stillborn, I abort the second one because I was scared, and now I have my son. During my pregnancy, I went to the doctor every week for stress evaluation and they also check the heart rate of my son. Now unfortunely, 2 months aftler I delivery, they preformed a tubulgation so that I would not get pregnant again which I am very sad about. But be patient, postive and pray for the best. The doctors wanted me to not go through with the pregnancy, they said that because of my heart condition that it was a 50 percent chance that my son and I was not make it because of the stress on my heart, but here we are.:p

[mantrashak]

Hi...

This is something I've also thought long and hard about. I've had HCM since I was a baby. I apparently have a 50/50 chance of passing the condition on.

I've started seeing a girl, and have talked about this with her. She doesn't know if she can have children herself yet. But we've both agreed that if things work out, it would be nice to have children of our own. I'm glad I'm here and don't blame my parents for having me, or for the fact I've got HCM. So I'm willing to take the risk. My children could be healthy. Or they could inherit the HCM. Even with the HCM, they could still be healthy. I am!

[THW]

It's a very personal decision, so I won't really give advice one way or another about whether or not to become a parent, but since I have one biological son and have adopted a set of twins also, I feel like I should chime in.

Of course there is probably no one who has gone down either (biological or adoptive) of the parenting journeys who is going to say that they wouldn't do it again. We love our babies and to say in any way, that it was a mistake to become pregnant or have biological children, then it might be construed as saying that we don't love our babies, and that is just not the case. Of course we're glad we have them (no matter how we got them), and of course they are not mistakes.

I'm quite certain that my pregnancy made my heart condition worse (Previously, I had a very low gradient, like 18, that went up to and remained at at least 125 during and post-pregnancy, previously minimal septal thickening, and rather asymptomatic, post pregnancy -- another story); I had complications during my pregnancy, and my delivery was also a little scarey. I'm also pretty certain that our adoption journey put some major stress and wear and tear on my heart -- not just the emotional one, but the physical one too. I don't believe the two can be separated.

I love my biological son with all my heart and soul, but I can tell you first hand, that I also love my adopted son and daughter with all of my heart and soul. There is no doubt in my mind that God hand-picked all 3 of these children for my husband and me. There is no doubt. So many have shared that they would 'do it again' because of the joy their children bring them or because of the experience of having children, but I'm here to tell you that adopted children bring those same joys and everything else that biological children bring. I DO think that SOME people who have not adopted feel that (or at LEAST wonder if) a person cannot possibly experience, with adopted children, the same kind of love a person can experience with a biological child. I have to admit that I wondered that myself, prior to adopting. As hard as it is for some to believe, I can tell you that simply is NOT true. (And you would get my same response from their daddy, grandparents, and aunts, uncles, and cousins. All 3 of our children are just loved, cared for, and doted over beyond belief by our relatives.) Love is love, a bond is a bond, and the feeling it brings varies with each person, but NOT with biology or paperwork. We were at the hospital when our (adopted) twins were born, and we bonded with them as we bonded with our biological son. However, I have many friends who have adopted who did not have custody of their children until they were months or years old. You would not know it by looking into their emotional hearts. They are their babies. They are a family even though they do not share the same genes. Yes, being pregnant can be a mysterious, wonderful, awesome, miraculous experience, but I use those same words to describe our adoption experience. To us it was truly miraculous, and I could write a book on the rollercoaster of emotions that went with each step of the process. What we went through was incredible, and to think now, after only 3 short years, of being in love with our delicious twins, that I look at them and never even think of what it took to get them --that I usually actually forget that I didn't "have" them until it is brought to mind....

Esther is right. Birth IS a miracle and a gift from God....regardless of WHO is giving the birth. I have to agree with Linda also; Life is not all about parenting for some; it's about our humanity and our spirituality.

You're 16; it is so natural for you to think about this, to be wanting to know what is right for you. The others who already shared with you are right....this is something that you and your husband will need to decide together along with a very strong HCM specialist, one that will be able to tell you about all of the possible risks -- short-term and long-term (not just during pregnancy and delivery, but what the risks are for you in the future, or how HCM can progress), for yourself and any biological children or even any adopted children. And honestly, you MAY want your parents or a strong support system on board, because you may need their help, depending on what your health becomes like in the future. I certainly have needed lots of help from family and friends due to my heart health issues at one point or another. Because just know, that regardless of the journey you take to becoming a parent if you so choose to do that, just keep in mind that (good) parenting is not for wimps! :) Regardless of how you get to parenting, you want to be able to be healthy in order to take good care of them, so regardless of how you choose to become a parent, being cared for by a true HCM specialist is a good idea.

Hang in there.
Respectfully,
Theresa

[Cynaburst]

Theresa - Nice to see you around here! We have missed you. Thank you for that thoughtful and heartfelt reply. That was really wonderful of you.

[Reenie]

Theresa, you should write that book on the emotional rollercoaster of adoption. You write so well and you convey just what you're trying to get across. Thank you for sharing your story with us.