Disabled Parenting Project Message Boards › New to DPP with Cerebral palsy, looking for people with CP who've had children
May 12, 2016 at 11:09 am #710
My name is Brittany and I’m new to DPP. I was referred to DPP after meeting with the Michigan Disability Rights Coalition. I’m married to my wonderful husband Andrew and we are starting to discuss the prospect of becoming parents. I have cerebral palsy so it makes the discussion more complicated than most and unfortunately my husband doesn’t understand what all goes into pregnancy with a disability and the modifications that will need to be made in order for me to parent well as a parent with a disability. I’m hoping to connect with others who have faced pregnancy while also having a disability and then learn from other parents with disabilities about the modifications and technology that is available to make parenting less daunting. We aren’t pregnant yet as we are still trying to get the OK from doctors and if we don’t get the OK to pursue pregnancy, adoption is next on our list and that of course comes with its own challenges. I’d love to connect with others who have CP or similar disabilities that can possibly ease some of my fears of becoming pregnant and parenting and tell me what technologies and modifications have been the most helpful!
BlessingsMay 12, 2016 at 1:40 pm #712
I have moderate diplegic CP. I use a wheelchair and crutches outside of the home but walk independently inside of my home, just to give you an idea of the functional limitations of my CP. I’m also 26 weeks pregnant with my first and only child after years of infertility treatment (which had nothing to do with my CP). I’m also originally from Michigan, although I live on the East Coast now.
CP is in no way a contraindication for pregnancy, so if your doctor stands in your way and tells you not to persue pregnancy, I suggest finding another doctor immediately. Even with other diagnoses that often accompany CP such as epilepsy, pregnancy is still possible.
This message board is new and growing, so definitely keep checking in here for other’s experiences. In addition there is a very active group over on Facebook specifically for moms with CP, and women with CP contemplating parenthood. Do a search for “Mommies with Cerebral Palsy” on Facebook and join us. It’s a closed group that is very well-moderated, so it’s a safe place to share your concerns. These women have so much info to share.May 12, 2016 at 5:19 pm #713
My name is Jennifer, and I have spastic quad cerebral palsy. I am a full-time wheelchair user. I can tell you that my experience regarding pregnancy and motherhood has not been easy, but it has been totally worth it. Here is my advice:
Ask plenty of questions from whatever resources and support are available. If your doctor frowns upon pregnancy, ask why, then verify his/her information with your own research.
Pregnancy is an amazing process, but CP will factor in to some of the changes that your body will go through. Be prepared to make the necessary adjustments to your lifestyle, and, more than likely, to your assistive equipment. Sometimes, I hated my wheelchair to the core of my very being, but that’s just me.
My little boy is now six years old, and I am still learning. Try to write down whatever questions pop into your head, no matter how random.
My last piece of advice: Keep lots of pillows on hand! Trust me.May 12, 2016 at 6:57 pm #714
I tried looking for the Facebook group and can’t find it any idea how to fix that? I have diplegic cerebral palsy and wear AFOs daily and have a scooter for long distances. I am waiting on Ok from doctors because we are doing Botox and phenol shots in my legs to reduce spasticity and we want to make sure my spasticity is reduced before pregnancy also I’ve had a lot of issues with my pelvic floor so we want to make sure that’s handled for the most part. Luckily I think it’s getting much better.
May 12, 2016 at 8:27 pm #717
- This reply was modified 1 year, 5 months ago by borians.
They will probably want to be super conservative and wait until your phenol and botox wear off until they give you the greenlight to try to conceive. I was taking baclofen and neurontin, and went off of both of those and stopped injections before I started trying.
It took getting pregnant to realize that I had a very weak pelvic floor. Pregnancy will stress that, but isn’t a reason in and of itself to avoid pregnancy. I ended up having to use poise pads throughout the first trimester, and will need them again soon now that I’m almost to the third tri, I can tell. But plenty of women have weak pelvic floors who do not have CP so we are in good company. It’s a good thing to address before conceiving. Emptying my bladder every hour whether I felt like I needed to go or not helped that, and early on when I felt a lot of pressure and was convinced the baby was falling out I got a few extra cervical ultrasounds. All’s well!
I do recommend going to a major academic medical center for your OB care. We aren’t high risk because of our CP, but we often end up classified as high risk because we are different. This is true for many women with mobility impairments. So, if you are near UofM or another big academic center I’d choose that over your local community hospital. When I lived in Michigan, I did all my well-woman GYN care at UofM, and my providers were always supportive of my eventual plans for pregnancy. Not much freaks them out!
Try this link and see if it takes you to the facebook group:
It may not work. If not, make sure you’re typing in the right name, “Mommies with Cerebral Palsy.” It should pop right up. You’ll have to send a message to the group admin (Ginni) to be added, but she responds super quickly.May 13, 2016 at 7:55 am #718
Thanks Nicole! I was able to find the group and requested to be in it, but no response yet. My OB/GYN is through U of M and her specialty is women with developmental disabilities so I should be all set there. I also have a uro-gynecologist that I see through the U of M bowel control program so I’m thinking he will follow me as well if I get pregnant in the event that I have any urinary issues. I tried baclofen but it didn’t work for me so that’s why we are doing phenol and botox. I’m not sure how many more we want to do before I start trying to get pregnant. Right now I have the nexplanon birth control implant so there is not really any risk of getting pregnant while receiving these injections. I’m curious, is there a way we can connect outside of DPP like email or something so that we can continue talking. I know it can be kind of a hassle to talk through the replies on the message board post. Thank you for all of your encouragement and understanding as well!May 13, 2016 at 9:43 am #719
Sounds like you are in great hands! And I know of that OB/Gyn and that program for women with DD and women’s health at UofM! Glad to see it’s still going on!
I will find you over in the other group as soon as Ginni adds you! I don’t think this forum has a private message feature. There are also a ton of women in that group from Michigan, and at least 5-6 from the A2 area. Seriously, you guys could have wheelchair accessible playdates, there are so many. I’m so jealous. I’m glad I moved because that’s how my life really got off the ground, but I really miss A2 most days.
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