Newly diagnosed and wanting to get pregnant

[elemkay80]

Hi everyone,

My name is Michelle and I'm newly diagnosed (in the last week) with ALS. I'm 27 with no children, but my partner and I had been talking about trying in the next year. Now with this diagnosis, I really want to start trying as soon as possible, before my symptoms progress much further. So far, I only have weakness/palsy in my hands, right more than left. I'm still waiting to have my 2nd opinion done, but I was just wondering if anyone here knew anything about the risks of pregnancy with ALS? I've tried researching on the internet but to no avail. I'm mostly wondering if being pregnant will speed up my progression significantly. If anyone has any information or experiences they could share, I would be very appreciative.

Thank you, and my well wishes to everyone with this disease.
~Michelle

 

[Al]

Hi Michelle. We do have a couple of members that have had babies either with ALS or waiting for a diagnosis. It may take a bit of time to get answers from them.

AL.

 

[tmasters]

Book Recommendation

Hi Michelle,

Welcome, but sorry for your diagnosis, especially at such a young age.

Have you read the book "I Remember Running..." by Darcy Wakefield? It's the first thing I read after hearing about this. The author tells her true story of being diagnosed with ALS and her decision whether to have a baby.

You can google "i remember running als" and you'll find it.

Keep the faith,
-Tom

 

[Sammantha]

Hi Michelle, i am so sorry........................ I think the biggest problem you might face with pregnancy is your abdominal muscles being weak and leg swelling. Maybe lots of muscle ache/pain.. Good news is most people who are pregenant get this anyway! If your muscles are too weak to push out the baby then you can have a c section.. I think your biggest worry should be what you will do after the baby comes. I have two friends that have babies that i love to death, but i can only hold them for like ten minutes and my arms give out. I do not have ALS but muscle issues. Make sure you have a supportive team around you and that you can have a family or friend be there with you to take care of the baby... Believe me with my kids my muscles were huge and i could carry a kid on one hip a full diaper bag on the other hip, and keep my phone to my ear and walk at the same time...... Now i hate holding a little phone, my hand cramps up... It is so possible for you to have a baby and i feel like its the greatest gift in the world. Just make sure you have a husband that will do more than his fair share of helping and a family that will help you when you have no energy... Good luck and i let us know what you decide... Best wishes, Sammantha

 

[patricia1]

In my opinion and its my opinion
Its a bad idea.and somewhat selfish.
A baby is alot of responsibility and you will need extensive care yourself
You will need a hugh support system
This is a monumental decision that needs to be addressed with your family and see if they are willing to raise your child.
ALS is a horrible disease that will rob you of your ability to do the littliest things

I hope God will give you the best answer
Pat

 

[John1]

Hi Michelle,

I'm sorry for your diagnosis and sorry for the rough welcome you got from one member. I don't think you were asking for advice on the ethics of getting pregnant or whether to seek God's advice but rather, what are the risks involved. Sorry I can't help with the latter but one consideration you might want to include is estimating your speed of progression. I don't know how much you know about ALS at this point but the progression rates are highly variable from one individual to another. In my case my first symptom was 14 years ago. I still drive and work. Others are slower progressing and of course many are faster. Progression rates tend to be fairly constant overall. If you noted the first symptoms a year or more ago, you may have fairly slow progression. If your first symptoms were in the past few months and you have been diagnosed already, you may be fairly fast.

One other consideration, as a rule (many exceptions though) younger people progress more slowly than older. There is one woman in the UK who posts here who was diagnosed at about your age many years ago. She is still raising her two kids. She may well respond to you.

Good luck on your decision.

John

 

[Markbreton]

I agree with John's comments and it must have been terrible finding out about ALS at such an early age. Having a baby under normal circumstances is always a serious and difficult decision. My wife, 53, was Dx 3 years ago with Bulbar onset and the progression has been slow but steady. I hope this is not taken out of context, but you only live once and as Al always says, live today like there is no tomorrow. If you want a child and have accepted the responsibility along with your condition.. "GO FOR IT".
Best of luck!
Mark

 

[awieleba]

HI Michelle,

I am sorry for diagnosed! Life is always different than we plan it to be. I dont have an als diagnosed, but i have alot of muscle issue's. It all started at the end of my pregnancy and after of my third child. I can not assume to know what it would be like to have als and be pregnant. But, I do know what I feel like with 3 kids. IT is the best thing ever! It is the hardest thing ever right now with all these issues. MY back and neck muscles have been in throbbing pain for a week, I want to cry. I believe it is from holding my 11 month old and carrying her around all the time. And let me tell you that it is WORTH every pain! I loooove it. My hands ache so bad I drive with my wrists, and I love doing it. I would say that my kids are what keep me going and get me out and about. I have a supportive family and great husband. IF your husband and family want this too and know what to expect, then why shouldnt you have this JOY? I kept (and still do) think that I wont be there for this or for that, but we are not guarented anything. it is very emotionally draining thinking abuot the furture and i worry or mourn about what I wont be around for but I live in THIS moment and I love it. I enjoy the simple things that I may not have enjoyed before or been too stressed to realize. I love just laying with kids or reading to them or watching them have fun. I worry about not being there in the future but I trust my husband and family.

My nieghbor's friend at church was young and was having her first child. she had an annurysim (Sp) and died during child birth, soo sad. A family at my son's school last year, the dad was killed in a car accident on the way home from a christmas party. MY hubby's cousin died by falling off a latter while in the garage and no life insurance and left 4 kids....I could go on. My point is that none of us are promised anything. We are all going to die, it is the one sure thing in life. So you and your partner should do what you want to do and expierence ALL the joys of life. If you know that your child will be well cared for after you pass, then why not? The one thing I feel is blessed that I know my 3 kids will be beyond cared for if I pass. It wont replace the pain they will feel, but kids are resilent and if they have a strong unit it will be ok.

Good luck with this journey. I agree with Jon, this may progress slowly and you may have a long time with your family....one never knows.

 

[rose]

Dear Michelle,

I don't have any real words of wisdom as far as ALS, but as a mom, I can say that my children are my legacy, they are the best thing I've done with my life. I have accomplishments, yes, and its not to say, and should never be construed, that I would think that those that have not had children, have given this world something less than me. I'm just speaking for me and only myself.

However, becoming a parent is a life changing event, regardless of health. It is a job that doesn't take time off, doesn't rest because its bedtime, or the newness or cuteness has worn off. Its not just rocking your baby, its helping with schoolwork, and upset stomachs, and other less than endearing life events.

I'm sure that because you've gotten this diagnosis, that you've already considered the possibility that your child might spend a portion of his or her childhood without you. Maybe many would be better parents if they had that, the knowledge that they didn't have unlimited time to be what they should be for their child.

I don't think anyone on here or anywhere can really advise you what is the right choice for you. Just know that having a baby goes way beyond a sentimentalized means to have something of you and the one you love carry on after you.

I wish you the very best in making your decisions, and hope that you will have a slow progression with the disease. Hopefully, as you're so young, that will be the case.

Good luck to you in this and your future.

 

[Marjorie R. Wilcox]

Input

So sorry for your diagnosis. I know I would chance having a baby for my own sake... the whole experience is the best there is in life. I was once known as sterile, and once I was cured with fertility drugs, I had six precious babies that were and are my life. (They are all grown and married with children of their own now.) But let me relate my new husband's experience in his family. His mother was diagnosed with.... well, something back in 1946. They called it MS because it was obvious it was some kind of muscular disease. Nothing much was known about other related nerve diseases and the consequences back then. She had just had her first child, a boy, when she began to show symptoms. She was told by her doctor that if she wanted to have a larger family, she should do so while the sunshone, as the saying goes. She proceeded to have a total of three baby boys in the span of only 4 years. All three appeared healthy and had normal lives.... now in their 60's. She progressed with her disease in a manner considered slow progression. She lived to be 62 and died in 1981 I think. She had to have care. She couldn't speak hardly at all, she couldn't use her hands, and couldn't walk. She had eating problems and loss of weight, had much pain all over, etc. Her one baby had spinal meningitis at one year and almost died. He now has ALS. Did he get it from her by inheritance? Could be. Would he wish he hadn't been born? Of course not. He has lived a rich, rewarding life, and even didn't mind carrying his mother upstairs to her bed each night throughout his teen and college years. They accepted their mother's illness as ordinary. They loved her dearly.... and I love Rick dearly.... and never regret marrying him in the start of this disease. I would have it no other way. Life is short. ........ and for myself.... I know that if my baby had been found to be deformed..... the one I had at age 39, I would not have had an abortion. You can make of your life anything you want it to be.... in spite of the circumstances. What it all depends on is the attitude of those around you and more specifically, yours and your husbands's in this matter. Hope I have helped you decide... and I will be waiting to hear what you decide. m

 

[ptich]

Please take into consideration that the physical and mental stress related to the childbirth will, most likely, speed up the progression of the desease.

 

[elemkay80]

I want to sincerely thank everyone for their posts. While I understand that the data for pregnancy after an ALS diagnosis is difficult to find, I am very appreciative for the viewpoints of other PALS who have children. It has helped me to be more confident in the decision I had already made in my heart to go ahead and try to become a mother.

I am a born arguer, so I am attempting to hold my tongue in response to the ethical opinion of another member. I would not have asked for advice had I not first considered the ethical ramifications of such a decision and had the full support of my partner, my family, and my partner's family. Everyone understands how my abilities will one day become limited and is ready and willing to support not only me, but also my child whenever that day comes. They also understand that this disease will take me one day, hopefully a a long way off, and that they will be responsible for raising my child. I couldn't ask for a more supportive circle. That is what family is for.

I started having symptoms in January of this year, just in my right hand. I'm still in the early stages of finalizing a diagnosis (waiting for 2nd & 3rd opinions), so no info has been given on what the speed of my progression is versus the "norm" (if there is one?). My writing and typing are impaired, as well as some of my duties at work - I'm an ICU nurse, but as everyone has said and as everything I've read has said, hopefully my age will help me out. My diagnosis only came from being a pain in the butt nurse to doctors I work with about my inability to start an IV. I don't know if I would have been put off longer had I not known what buttons to push on particular doctors.

Again, thank you to everyone for your positive comments. It is great to know that there is such a supportive community available.

-Michelle

 

[elemkay80]

Please take into consideration that the physical and mental stress related to the childbirth will, most likely, speed up the progression of the desease.

As a side, do you know of any research or personal experience to back this up? As a medical professional, I have difficulty taking statements like this at face value. But if you know of any articles or something similar to support it, I would be very appreciative!

 

[brendapals]

Michelle,
My hat goes off to you girl! An ICU nurse, that's cool. I'm also a nurse, worked ER and ICU for about 4 yrs, then nursing management, yuk, for 3 yrs, now I'm the nurse manager for the IV room in a rheumatologist practice! Less stress, better hours, no on call!
I was diagnosed in June this year. My speach is the only thing affected thus far. Most of my patients just tell me they thought I had been drinking too much before I came to work!
you know the drill, life isn't practice, we only get one shot at it-
By the way, our boys are 18, 15 and 7, and I have about 5 weeks left and I'll have my BSN. Where there is a strong will, there is a way,
Never give up,
Never let up,
Never lose faith,
brenda

 

[ptich]

I know of no research, or anybody's experience, to prove statistically that stress shortens ALS patient's life. But there is ample evidence on this forum, and from my personal experience, that any kind of stress *markedly* amplifies many types of ALS symptoms (fasciculations, cramps, various UMN deficiencies). There is no offically proven link between speed of progression and amplitude of the symptoms that I know of, but I would be very surprized if it does not exist, because normally folks with more evident symptoms deteriorate faster.

As a side, do you know of any research or personal experience to back this up? As a medical professional, I have difficulty taking statements like this at face value. But if you know of any articles or something similar to support it, I would be very appreciative!