Deciding to have children - when you have MS
 

Hi everyone,

So, I'm not getting any younger (and I feel really old even though rationally I am only 33)... I also have MS and my future seems so rocky and unsure lately.

I really want to have children and don't want to wait much longer. But - I feel REALLY selfish deciding to have children when I am "sick" and don't know what the future holds for me.

Yes, I know that no one knows what the future holds - but with MS, as we know, anything can happen, and chances are - bad things might happen.

I might be really jaded because I grew up with a sick mother (had cancer when I was 9 yrs old - and was sick for 10 years before she died). I HATED having a sick mother - it really sucked. I wouldn't wish my experience on anyone. So - how can I, in good conscience, decide to have children?

Anyone out there thinking about these things? Anyone decide to have children even though they knew they had MS?

Thanks,

Keri

Hi Keri,
 

I wish I had answers for you. I had two children when I was 20 and 22. Then I had two more children when I was 30 and 32. I did have some health problems going on when I had those last two, but didn't know it was ms. I could have been dx then had I pursued my issues with the right doctors. But then I wonder if I was meant to not know about the ms until they were almost raised.

My four kids have all felt the worries and pressures of having a mom who didn't feel well for all these years... and a dad who had cancer. But I can tell you that whether it is ms, cancer, or something else....no one knows what tomorrow will bring. And heartache is a part of everyone's life. Everyone has there own struggles to deal with eventually.

Do you have a close family to help you out? People you know you can depend on? I know what the yearning of wanting children is like. I would not give any of mine back even if it were to save them from hurt and heartache. I believe they have many more positives experiences with me than the negatives. and believe me they have been through a lot over the years.

Now, having said that... I have been fortunate to have a supportive family, not that I gave my obligations over to them. I didn't. But they were there when times were really hard for support and help and different ways.

I haven't given an answer and have none to give. But I know what you are feeling and hope someone else can give you a better answer.
Hugs, A Friend:hug:

Hi Keri,

I think there are a lot of variables to consider. If you are well off financially and can afford help around the house if you need it, that would be huge. Supportive family is also huge. Doting Grandparents, for instance. Does your husband want kids? Is he the kind that will pick up the slack if you need him to?

I think your attitude is very important. If you have a positive attitude and can be there emotionally for your children and offer guidance and support, even if you can't always be physically active, that counts for a lot. All kids need a cheering section.

Even though I had my kids long before MS came into the picture, I've always been heat intolerant. When they had outdoor activities that involved sun and heat, I would find someone else to take them and/or I would trade off for something else. They never missed out because of me. (They hung out with their father more in the summer!)

My mother has MS but managed to work and raise a family. She's 81 now and uses a walker but she was able to babysit my kids when they were young. I'm rather glad she decided to have kids in spite of MS! My kids are probably glad that I did too, even though I didn't know that I would end up with MS as well.

I still work and run around after my own grandchildren now.

C

I want to have kids too someday, but being realistic that I probably wont ever have any. I'm 40. My boyfriend isnt interested in having kids with me...and I have the evil MS to deal with.

I think if I were to accidentally end up with a kid, I'd be ok with it tho...I'd probably have to have help with it, but I think it would be ok.

My big problem with having kids is that I've never taken care of a kid, apart from watching a relative's kid for an hour or two. I can count on one hand the number of times I've changed a diaper, and I'd have 5 fingers left over.

I wouldnt know how to take care of a baby, much less raise one. I couldnt even handle a puppy. (granted, I was allergic to the puppy, and beginning an annoying exacerbation at the time)

Hi, Keri.

I had both my children after I was dx'd, my son is now 19 and in his 2nd year of college, my daughter is 17 and a senior in High School.

My children are compassionate and caring young people who have helped me when needed. My son did the MS walk this past spring and wrote I was his hero. My daughter did a report on MS for one of her classes last year.

Both of my children can and have expained to their peers as well as adults about MS.

I have never been sorry about having MS and deciding to have children. Sometimes I think it's because of them that I have been able to live like there is nothing wrong as my focus is more about them than me.

Children can be amazing and adaptable.

It's your personal decision to have or not have children and I wish you all the best in whatever you decide.

Erin - Parenthood is on the job training with mistakes made along the way but willing to do the best you can. Babies/children do not come with owner manuels, you wing it most of the time ;)

I have one natural child, and had him long before any sickness cropped up. I have one adopted, and she was simply grateful to have a place to call home. I was dx with breast cancer in 91, and that was when he was 9 years old. it was very hard on him, and he worried alot about his mommy. I tried very hard to keep adult things, between the adults. A divorce when he was younger took a chunk out of him, and a drunk daddy took another bite. After the dx of cancer, I made sure to really work hard at putting a foundation under him. I had him see a counselor, and made sure that he had tons of involvments if he wanted them. Baseball, fishing, hiking, camping, boy scouts (he made eagle) and loads of firm, stable male influences other than his daddy. I was impressed when at 14 he rescued a young girl from school. Dragged her home, and was caretaking her for a while before he revealed her. Told me he knew what it was like to watch others struggle, and he couldnt stand by and watch her do it, when it was so easy to be helpful. (I was so proud!) We adopted the girl.

btw the my son graduated with honors and went on to be a proud Marine who continues his education while inside. My adopted daughter went on to get her masters in finance and has reconciled with her estranged mother. Both are caring, sensitive, and amazing kids. I think the hard knocks on the road made them stronger. its hard to decide if you will help them over the hump or sheild them from the hump. I think the humps helped mine grow.

anyway, my point is there are many many many bumps and bruises on the road of life. Whether its that mommy has MS, or that mommy has self esteem issues because she has acne scars and feels like she is ugly compared to the other mommies. Some mommies are shy, and some are aggressive and in your face. The best thing you can do if you chose to have children is ...to just be yourself. Yes, it sucks to have a sick mommy, but sometimes it sucks to have a well mommy with a bad attitude. Yes, it sucks to worry about mommy, but it also sucks to have a mommy that is more concerned with her b/fs or g/fs or job than her child.

I think you would be a great mommy BECAUSE you have MS. Because you know what its like to struggle, and have hope. Because you know what its like to feel left out, left behind, on your own. Because you know what its like to battle demons. I think that ADDS to your resume in asking for the position.

Whether you chose to have a child of your own, or rescue one from the social services system, or one of both, I think you will do just fine. You are taking the time to ask these questions before little suzy or sammy get here. That is the mark of a mature, person who is ready to take on the challenge.

I think you will do awesome! go forth and multipy! :D

Snoopy's right on both counts.

My mom had MS when she gave birth to me. It was just part and parcel of our family to deal with it to me. Did have my moments sometimes, but with humor and love managed to adapt.

Hubby and I had a long talk about kids. We were just getting serious about this when the DX year hit. He's got a few auto-immune diseases in his family, and mine has almost all of them :D But that wasn't the main reason for us deciding to not do it. He didn't like the 1/3 chance of me going into a bad flare after birth.

My paternal grandmother also had MS, and was paralyzed for three months after my dad was born. My grandfather irrationally blamed him for it, and it put a strain on their relationship forever. My hubby is afraid he would be the same way. :( After what seeing happened in my own family, can definitely respect that.

On a side note - out of all the family, I'm the only other one with MS. So it's definitely not a certainty that the kids will get it.

(((HUGS))) and best of luck whatever you decide.

There have been some very good thoughts here for you to consider.

My question for you is whether the treatments that you are receiving from JH could be detrimental for a fetus. The program seems to be rather toxic and perhaps you should be asking your docs at the hospital what they recommend.

Both of my sons were born before I was diagnosed. They were only three and 6 months old at the time and it would have been very difficult for me to have raised them without my devoted husband who took 90% of the responsibility of caring for them. My life today would be in the pits without my sons and I am very thankful that I have them.



gmi

I have given a lot of thought to this even though my kids were born long before I was dx'd. I can't imagine my life without my sons :). I wouldn't go back and change a thing when comes to having my boys (they're 22 and 18).

My youngest has Crohn's disease and so does my husband. I know that the illnesses in our family have caused much hardship but they have also made my kids much more empathetic. Kids are very resilient :). I think you would be a great mom :D! If you are financially secure enough to afford some help that would be great. I know from your past postings that you don't have much family support but you do have good friends, right? Have you talked with them about this? You have a god son, I think? Maybe talk to his mom or dad. This is a tough decision but i'm sure you'll make the right one for you :hug:

I had both my children when I was young (pre MS). I was 22 and 26 when they were born. I'm 48 now. I was dx at 44.

My kids had a nice childhood. They didn't get everything they wanted but they did have everything they needed.

My kids were compassionate people before I was dx but I think that (my illness) has played a major part in their attitude towards all folks in general. Well, that and a few other "life experiences" they've had forced on them.

Adversity makes you stronger (IMO). Having everything just perfect in your life all the time tends to make for a selfish, uncaring and self-absorbed individual. We all need to learn how to accept others no matter what their "imperfection" might be. :)

I was an "old Motha", 36 at my twins birth after years of infertility (old mother - multiples - you know I did fertility drugs.) But I've met really bad parents who don't have MS. Kids were 10 when I was DXed , now 17 they help Mom as much as they can or I allow. There no guarantee kids get emotionally and psychologically or never touched physically healthy parents. There are much harder things for kids than MS parents. They see the good stuff.

I think you are very wise to consider all these things before just doing it because "no one knows what the future may bring". Unfortunately with MS we surely do have a better idea of what it could bring than most people.

My two major concerns would be the chance of passing it on to a child, yes there is an increased risk imo, as well as financial stability in case you need to hire someone to care for you or your child. If finances aren't a concern adoption might be a great alternative.

Growing up today is hard enough under the best of circumstances and while all the success stories are inspiring reading just one on MS World from a young person who is terrified of getting MS or has had to be the primary care giver for their parent with MS breaks my heart.

Best wishes with whatever you decide.

Something to consider perhaps...
 

[QUOTE=RedPenguins;568132]Hi everyone,

So, I'm not getting any younger (and I feel really old even though rationally I am only 33)... I also have MS and my future seems so rocky and unsure lately.

I really want to have children and don't want to wait much longer. But - I feel REALLY selfish deciding to have children when I am "sick" and don't know what the future holds for me.


Hi Keri,

I was diagnosed when I was 32. At that time, the neuro. told my husband and I that, the MS was found in the very early stages. He also said that to have children would be fine. He also said that it's common to have a postpartum exacerbation.

The next year, I gave birth to my son :) And the doc. was right, a month after birth, the exacerbation occurred. That was in the form of major fatigue.

But today, my son is 8 years old and is doing fine :)

Basically, If you've a mind to have a baby, go ahead. Work with your family and doctors.

Cheers!

Niko:cool:

Thank you for sharing the other side of this subject. Sending hugs for you and your dear son.

I had MS before I got married....didn't know it till after my baby was born. I was dx when she was 4/5. I was lucky to have been in a remission, until she graduated from college.

I think you should go for it....IF....your DH is supportive and you have supportive family and friends and you are, otherwise healthy.

Good wishes in whatever you choose to do..:hug::hug:


Edited to add....My DD has MS too, but I still am glad I had her. She has a good life and her MS is in remission. And .... she has given birth to 4 chillins..

I think you're wise to think this through. As someone who's chosen not to bring more children into this world, I can tell you I arrived at the decision pre-diagnosis. My circumstances were never really condusive to having kids and when they finally became condusive, I was past the age where it was statistically optimum for me (or the health of the child) to do so.
That said, the MS diagnosis would have been one more strike against the idea.

Really though, I know people who are fabulous parents in spite of adversity, don't let your illness = exclusively - make your decision.

It's never easy deciding to have a child. I love my kids but my boy feels sick, throat hurts, his joints ache. Flu or 40% (really?) chance of MS?. I always get a little worried. SIDS was never my worry, MS is. I sent a new mother a card that said "Having a child is deciding to wear your heart on the outside". It's a serious responsibility. Good luck on whatever you decide on.

This is a great discussion and now I'll add my 2 cents

I was DX when my children were 3 and 1(they're 27,25 now) so my MS has always been a part of their lives. After my DX I decided not to have any more children and I have always regretted that decision. I was lucky to feel fine up until the time my kids were through with elementary school but ever since then there have been MS related issues and treatments. Through it all my kids have been supportive, at times resentful, patient and my biggest cheerleaders. Yes they hated having to do chores that their friends might not have had to do but they were glad to have those skills once they left home. I always tried my best to do the things a "normal" mom would do and I think that they knew that I wasn't giving up so they always accepted my limitations and hung in there with me. Today my kids are amazing adults with great strength and compassion. While I couldn't always do everything for or with my kids they always knew that I was there for them. My life had to move at a slower pace but that allowed me to be home and available when they needed my time or attention.

So I guess what I'm saying is that while MS will make you a "different" mother and it may take some things away from you and your child, it will also give you other things in return. Children need to know that they are loved and you sound like someone who can do this. Everything else will come in time. We're human, they're aren't any guarantees just hopes.
:hug: Karen

RedPenguins. 40% made no sense to me 1 in 40 for parent having MS. NMSS says they think that still low. Please consider facts yourself on this.

Epidemiologic surveys have determined that an individual's risk of developing MS increases several-fold if a close family member has MS. While the average person in the United States has about 1 chance in 750 of developing MS, the risk for a person who has a parent or sibling with MS increases to about 1 in 40. MS. Thus, the risk increases significantly for a person whose parent has MS, but still remains relatively low.

These risk estimates, however, are oversimplifications that can easily be misinterpreted. We now know, for example, that risk estimates can vary greatly depending upon the structure of a person’s family. In families in which MS occurs in many relatives, the risks for any given individual are significantly higher than they are for an individual who has no family members with MS. Risk for MS is also affected in part by a person’s ethnic background and other factors that haven’t yet been clearly identified.

How do we know that genes are not the only factor in determining who gets MS? The identical twin of a person with MS has a 1 in 4 chance of developing the disease. The fact that identical twins of people with MS—who share all the same genes—don’t always get MS, and that more than 80% of people with MS do not have a first-degree relative with MS, demonstrates conclusively that MS is not directly inherited and that factors other than genetics must be involved.

not 40 but using my not so great math skills - 2.5% That is not considered high.

I know how you feel i to have ms and when i found out that i was preg. all of those things went though my mind as well but i just reallized that this could be my only chance of haveing a child becasue like you said ms can cause anything to happen and i just thought of this as a blessing. My mother also had cancer she had brest cancer and died when i was seven years old and when i look back on my childhood i do wish i had her in my life as i grew up but those seven years i had with her were the best years of my life. Thats why i make sure every day i spend with my daughter is feeled with loved and happyness. I had my baby two months ago or will be on the 24th i have had no problems, except for a couple of seziurs that were brought on my stress and lack of sleep. What ever the ms has in store for me i am ready for no matter how bad it gets i will fight my hardest becasue of my child. So dont let ms stop you make it the reason you one a child even more. :grouphug:

Keri,

I had my kids after I knew I had MS, and in fact specifically aimed to get pregnant 4 mo after they told me about the MS. My first daughter was born when I was still healing from the first Transverse Myelitis attack, and my second was born 3 1/2 yrs later. I don't regret my decisions, although it was very difficult at times.

I agree with others that support from friends and family would normally be one of the most critical factors in the decision.

In your particular situation, I would have to say that what concerns me most is how "aggressive" the disease is/isn't. From what I understand, they felt you were going to have a very progressive case from the get-go, and you seem to have had difficulty getting/keeping things under control to date. Only you know how you "really" compare to others in the early years, and only time will tell what will happen ... but the decisions were made to be uncharacteristically aggressive in your treatment options ... I would presume because it is believed that you do have very progressive MS.

That is a huge factor to consider, in your case.

Cherie