- This topic has 6 replies, 7 voices, and was last updated 1 year, 10 months ago by Jennifer Perkins.
May 9, 2021 at 7:59 pm #26729DaLiza FernandesParticipant
Hello everyone! My names DaLiza and I’m new here.
I am a 28 year old woman living with type III – type II SMA which I was diagnosed with when I was 2 years old. My husband and I just found out we’re pregnant and we are over the moon excited. We have been best friends for over 20 years and having children is our dream. The excitement of getting the news we’re going to have a baby has been compounded deeply by fear and doubt, which is all that we’re getting from our doctors. We are by no means naive to the risks, however I believe with my whole heart there is more than just the chance of doom in our future.
We are desperate to make connections with others who have been in our situation or for any information or resources anyone has to offer. I know there is little information known and everyone is different, but I also believe that there have to be woman out there that are living with similar limitations and risks and have given birth successfully.
Any references, points of contact, or information you could give me on the topic would be appreciated more than I can say! Looking forward to connecting with you all!
May 9, 2021 at 9:08 pm #26730DeAnn RKeymaster
First of all I’d like to say congratulations! Although I don’t have firsthand experience with this I know several SMA mamas who have had successful pregnancies. I believe you watched my interview with Jennifer Perkins on YouTube https://youtu.be/y9r2P6x0Zto She’s one example. I also follow Melissa on YouTube https://www.youtube.com/c/IcyisM-ClaudiasWorld/videos. She’s a mom with SMA as well. From what I gather a good support system is key. Do you partake in any of the Cure SMA adult socials? I’m not sure when the next one will be, but it’s a great way to make connections with others who have been through similar situations. Best of luck to you!
May 10, 2021 at 9:03 am #26733Dennis TurnerParticipant
Check out [email protected] . Megan is an awesome SMA mom of two boys and will likely be happy to talk with you.
May 10, 2021 at 9:04 am #26732Tammi BradleyParticipant
Congratulations!!! I am Mama to 2 adult children and now, Gam-Gam to my adorable grandson.
SMAII, Scoliosis with Harrington Rod fusion
Age 26 my daughter was born C-Section under general anesthesia
Age 32 my son was born C-Section under general anesthesia
My contact email [email protected]
I am an open book, ask me anything!!!
May 10, 2021 at 9:22 am #26736Kevin SchaeferKeymaster
DaLiza, congrats! Fantastic news.
I can imagine it is overwhelming, but as stated above, there are plenty of successful parents with SMA and other disabilities. As DeAnn noted, I highly recommend her interview with Jennifer and Jennifer’s YouTube channel. I’ve met many other parents with SMA as well at conferences. There are definitely resources out there and people to connect with.
Thanks for sharing! Keep us posted and let us know if there’s any way we can help.
May 10, 2021 at 9:33 am #26737Alyssa SilvaKeymaster
DaLiza! Congratulations!! I don’t have any resources or firsthand experience for you, but I just wanted to say hello and welcome you to the forums. I’m so happy for you!
May 12, 2021 at 3:00 pm #26766Jennifer PerkinsParticipant
Hey DaLiza! Congratulations! I did do a youtube video about pregnancy with SMA, but I am also currently pregnant with baby#2. I’m happy to answer any questions you may have.
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