Jacqueline’s symptoms of FSHD muscular dystrophy began at 16 years old. She shares with us today how she manages chronic pain and what that looked like throughout her pregnancy and birth journeys. Jacqueline is also a sexual violence trauma survivor and went through three pregnancy losses. Through her nonprofit organization and as a birth doula, she is a strong advocate for trauma-informed care for all women. 

Jacqueline shares inspiration and advice throughout the episode for women who also have a history of trauma as well as those who are trying to navigate birth with a neuromuscular condition. Her proactive approach to caring for her body and heart allowed Jacqueline to have a beautiful, empowering, and healing VBAC, especially after enduring so much.  

Anesthetic Management for Dystrophy Article

Needed Website

How to VBAC: The Ultimate Prep Course for Parents

Full Transcript under Episode Details 

Meagan: Hello, Women of Strength. Today’s episode is a VBAC episode, but it has an extra topic that is a first for the entire podcast life. In 320-something episodes, we have never talked about this specific topic. The other day on social media, I had a couple of spots so I reached out and I am so grateful for Jacqueline. Are you in Canada? 

Jacqueline: Yes. 

Meagan: Yes. She’s from Canada and she reached out and was like, “Hey, this is something about my story.” And I was like, “Yes, let’s do that because this would be amazing.” One of the things that we are going to be talking about today is FSHD muscular dystrophy. 

Jacqueline: Dystrophy. Dystrophy. 

Meagan: Okay, yes. We are going to be talking about that a little bit more and the challenges that you have had to go through with all of this. If you wouldn’t mind before we get to the review, will you tell us a little bit more about FSHD and one, what is it? Two, what are the things that we are told because you have it and how you had to birth if you were told?

Jacqueline: Yeah, absolutely. FSHD is a form of muscular dystrophy. It’s quite rare and it essentially affects the muscles in my shoulders and in my facial muscles as well. For everyone with FSHD, your symptoms present quite differently. Of all of the types of muscular dystrophy, it is one of the more common forms, but in the big scheme of conditions that you can live with, it definitely is still considered to be rare. 

I was diagnosed in 2018 officially though I had symptoms starting from the age of 16 and I gave birth to my first child when I was 21 years old. I didn’t have too many symptoms at that time. Going into my twenties, I started to have more atrophy in my shoulders, my lower back, and sometimes in my feet. 

My second and third processes were a little bit different, but overall, in terms of pregnancy and birth, my specialist always shared that you’re able to carry a baby and you’re able to give birth. The atrophy that we experience doesn’t necessarily affect that process thankfully, but I’ve always been someone who is very proactive in terms of minimizing my pain and trying to do different types of therapies to minimize the chronic pain that I live with so I’m very focused on that during pregnancy especially. 

In my most recent birth which happened 5 weeks ago now, I really focused on making sure that my body was very strong and at its optimal comfort level that I possibly could be while pregnant in order to achieve a successful VBAC. 

Meagan: Oh my gosh, thank you for sharing and we’re definitely going to go in through your journies and I’m sure it’s going to come up. We’re going to learn more about how you did that, how you made sure your body was at its most comfortable spot that it could be while growing a baby and how it’s impacted your life. Thank you for sharing. 

I do want to share a Review of the Week before we get too far into today’s episodes. This is by Rachel Thornton and it says, “Thanks for giving me the confidence to have a VBAC.” It says, “I am so glad I found this amazing podcast when I was newly pregnant with baby number two. After a long and traumatic first birth experience that ended in a C-section, I cautiously hoped that I could have a VBAC. Using this information that I learned from hearing other people’s stories on The VBAC Link, I felt confident and prepared for the birth of my son. On October 9, 2020, I had a beautiful, redemptive VBAC and welcomed our boy into the world. Thank you so much for helping me achieve this dream.” 

Girl, Rachel, you are amazing. Congratulations and thank you for sharing the story of your dream. I am so happy for you that you got your VBAC and as always, if you have opinions about The VBAC Link, please share them. Rate us. Give us a review and let us know what you think and maybe how we’re changing your dream as well. 

Meagan: Okay, Jacqueline. Okay, so you have three babies. 

Jacqueline: Yes. 

Meagan: One is 5 weeks old. 5 weeks? 

Jacqueline: Yes. 

Meagan: Itty bitty, bitty. Wow. Thank you so much for taking the time 5 weeks postpartum and you could be taking a nap right now and you are here with us sharing your story. I’m going to turn the time over to you and let you share away. 

Jacqueline: Great. As mentioned, I have three kids but this was actually my 8th pregnancy so I am quite well versed on pregnancy and birth and I am actually a doula myself. I went through the training process after I experienced three consecutive losses when I was trying to get pregnant with my husband. This was back in 2020. 

With that, I sort of had a new sense of knowledge coming into pregnancy and birth. That was following the birth of my daughter. I had her when I was 21 years old and that process was very different than my other two pregnancies and birth stories. Unfortunately, when I was pregnant with her I was in an abusive relationship. It’s a very unique story I guess you can say. 

I was living abroad at the time so most of my pregnancy care actually took place in Kenya where I was doing work with my nonprofit organization and then I moved back to Canada when I was 6 months pregnant and lived with my family at the time. They really supported me and just came to a level of peace before giving birth and mentally preparing for becoming a parent at a very young age and as a single mom. 

But going into that birth process, I really did no preparation at all. I found myself during this pregnancy and as I was preparing for the birth of my second son which happened just 5 weeks ago, I really found myself reflecting on my pregnancy and birth experience with my daughter. 

With her birth, I had no foundational knowledge aside from what I had seen in movies really and because of that, at 39 weeks, I ended up getting induced. It was a very long birth process. I was already in a very traumatized state because of what I was going through at the time and I had my mother and my grandmother there with me when I gave birth but my mother had also gone through inductions because my brother and I stayed locked in there until well over 42 weeks actually for both of my mom’s pregnancies. 

She had never experienced anything different. I didn’t think twice about experiencing an induction and to summarize that birth story really, I ended up giving birth vaginally after over 24 hours of laboring. I had a failed epidural which I got just before she was born about an hour and a half prior to her being born and I had no movement throughout the entire process. I quite literally just moved from one side of the bed to the other. I was watching Ugly Betty throughout my entire labor and delivery. That I do remember. It was my comfort show at the time. 

I largely just wanted the process to be over so that I could be with my baby and there were a lot of things that happened throughout that labor process that I didn’t even reflect on as unnecessary interventions again until this pregnancy. 

Jacqueline: 7 years later, when my husband and I decided that we wanted to start the process of expanding our family, we were really conscious about making sure that I didn’t have that same experience. I really opened up to him about how I was just in a state of survival with my daughter’s birth and how I didn’t want to go through that again. 

Again, at this time, I also was a doula as well. After we had experienced our losses, it was really important to me to just expand my knowledge and I felt really called to get that training because of the insensitivity that I experienced when I was navigating loss. 

Coming into the process of now having a rainbow baby and wanting for it to be a really redeeming birth as well, I tried to make sure again that my body was very strong coming into labor. 

One thing that I think stands out as a person living with a disability with FSHD muscular dystrophy is that often w