Log In or Register to Join The Conversation!

Sponsored Post

How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 8 replies, 4 voices, and was last updated 4 months, 4 weeks ago by Samantha.

  • Author
    Posts
    • #22668
      Crystal
      Participant

      For as long as I can remember, I’ve always wanted a child of my own. I can’t picture myself being able to have one, but I was wondering if any of you have had any? I’m also curious because of the movie idea I’m working on…

    • #22669
      Tracy Odell
      Participant

      Your question is not so random. Lots of people with disabilities have thought about having children, including people with SMA. I had two children in my early 30s (I have SMA type II). Both were born with C-sections. I had lots of support in their younger years due to my husband’s active involvement and also extra staffing that was available under our attendant service program called “nurturing assistance” which is something that I advocated with the Ontario government to develop for parents with disabilities who use attendant services. The program has been around for over thirty years now and many parents with disabilities are thriving due to the support. The Centre for Independent Living is Toronto has produced a guidebook for prospective parents.

      Anyways, it is very possible to have children if you have SMA. I strongly recommend that you have a positive attitude about having a disability because your child will definitely be a carrier and if your partner has the gene the chance of having a child with SMA becomes one in four. Those are odds that you have to be able to live with gladly and positively, and raise your children to feel the same way. Both my girls are all grown up and I have a granddaughter who is now going on thirteen years old.

      I’m happy to provide more information. Just ask!

    • #22670
      Crystal
      Participant

      Wow thank you so much! I was wondering about whether our kids might have SMA as well. Honestly, I think I would like to have a kid with SMA. Okay not for them. I wouldn’t wish this on anyone else and I know it’s hard on parents, but to be able to tell your kid “I know. I understand completely.” I don’t know, I feel like that would be great.
      I’m currently working on a movie idea that shows what it’s like to be a woman with SMA type 2 and I’m thinking about having the climax be her trying to have a baby but I don’t know anything about that. Did you have any complications with the pregnancy or the C-section? Do you have any advice on how to include this in my movie idea? Thank you!

    • #22671
      Tracy Odell
      Participant

      Hi Crystal. I had no problems with my pregnancies, but I was a healthy 135 lbs, no breathing issues. A friend of mine with SMA 2 is very petite and so had to have her baby delivered early, as there was no room for him to grow. It was difficult, but both came through ok, but her baby experienced some developmental complications as a “preemie.” Do your research but know there are no guarantees for anyone’s baby.

      Have you seen, “Wheels like Mine?”  Katrina Gossett Kelly writes about adopting a child with the same disability as hers: https://www.mda.org/quest/article/wheels-mine. She wrote:

      “I am a mom. I have spinal muscular atrophy (SMA). My son has SMA, too.

      “Because SMA is a genetic disorder, these statements may not seem surprising. It wouldn’t be all that strange for a person with SMA to pass on their condition to their child. But that is not our story. Our journey to family is more convoluted and, dare I say, even more beautiful than most would guess. Ours is a story of love and adoption and beauty where others see tragedy.”

      Your movie idea sounds intriguing!

    • #22674
      Halsey Blocher
      Participant

      Crystal, this is a great question! I don’t yet have children (I don’t plan to have biological children, I’d like to adopt at some point). But I’ve met many woman with SMA who have, so it’s very possible. There are a lot of considerations. Like Tracy said, any children you have would at least be carriers, and could be affected by SMA if the father also carries the gene. But it sounds like you’re okay with that possibility. Another thing to consider would be the affect of pregnancy on your body (and the baby). I would recommend consulting doctors who will closely monitor you during and after pregnancy. (OB/GYN, and probably a pulmonologist and cardiologist, at least.) You seem strong enough to be able to have a baby without a lot of trouble. I’ve actually met a couple of weaker type 1s who have had children, which blows my mind. And if you decide that you’re worried about the affect on your body, you could look into having a surrogate. The last thing I would recommend is making sure you have a good support system. It sounds like Tracy knows way more than me about support systems and assistive programs, so I’m sure she can give you a lot of great advice about that.

    • #22679
      Tammi Bradley
      Participant

      Greetings Crystal,

      During my pregnancies, I had SMA II and a Harrington rod spinal fusion.  My first child (daughter) was born via c-section when I was 26-years-old.  When she turned 20-months, I became a single mother.  I worked full time, drove an adapted van and had 10-hours of daycare during work hours (M-F) and PCA support the rest of the time.  My parents were already passed away, so it was just me.  It was exhausting, but absolutely worth every tear, meltdown and sleepless night!  So much so that I  did it again…

      When my daughter was 4-years-old, I met a wonderful man at work and finally found my knight in shining armor!  Two years later, we had a son.  Our son was born via c-section when I was 32-years-old.  The only “complication” I had was during my second pregnancy; I developed Gestational Diabetes that was successfully managed through diet.

      My most recent blessing occurred on October 7, 2018, when I became a GRANDMA!  My “sweet boy, Sutter” is [the] love of my life!

      I am a firm believer that anything is possible!  Establish multiple backup plans, educate yourself, ask many questions and live life the way you want.  All the rest will fall into place!

      Warmly,

      Tammi

       

       

    • #22689
      Crystal
      Participant

      Awe thank you all so much! You all are very inspiring!
      I’m not looking to have any kids at the moment for myself, although the possibility definitely gives me hope. I’m currently single and I probably will be for a while. I’m not dating or anything yet cuz I don’t think I’m ready. I’m still trying to heal from some abuse from my childhood, and until I can do that, I don’t think getting romantically involved with anyone is the best idea. I was abused physically and sexually, but the sexual abuse has had the worst effect on me. I want kids someday, but I’m not ready yet.
      For my character, however, I need to find out as much as I can about having children with SMA. I’m gonna look into C-section births, but I wonder what would happen if she tried to have a normal birth. Is that possible? Also, was it hard to sit up while pregnant? I know I find it hard to sit up when I’m bloated… not that that is the same thing. I’m just curious. How did you deal with the pain and vomiting, etc.?
      I’ve never heard of Wheels Like Mine but I’ll check it out for sure. Thank you!

    • #22690
      Tracy Odell
      Participant

      Hi Crystal,

      When I was pregnant I spoke to my doctor about the possibility of natural childbirth. He spoke to another doctor who had a patient with SMA and she went into regular labour but after twenty-four hours the labour had not progressed. The muscles were not strong enough to do labour the ordinary way. So he said I could go into labour if I wanted to have that experience, or we’d plan for a C-section which would be scheduled for a day he would be on duty.

      Since I tend to be a planner, I liked the idea of the C-section. It went very well. Both times.

      I didn’t have any trouble sitting up the entire time I was pregnant except with my second one toward the end. I would lay down partway through the day just to stretch out. My second baby was a little bit bigger and needed a little more room to squirm.

      I did not have severe morning sickness at all, but bit by bit certain foods would put me off. I don’t remember having any cravings.

    • #22701
      Crystal
      Participant

      Thank you, Tracy! This has helped me a lot.

Viewing 8 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.