Voices of PKD Blog
December 13, 2023

Ciara Morin, Toronto ON | Voices of PKD

Ciara_1.pngI always knew I wanted to have kids.

Planning a family is perhaps one of the most exciting chapters of life. It's a time full of excitement, yearning, and daydreaming. It's when two people come together from different backgrounds, with different stories, to plan for a future that includes mini-versions of themselves.

I get butterflies everytime I relive those early moments.

It's so fun to think about which traits a little one will inherit from each parent... like what colour hair will they have? Whose nose will they get? Then you start thinking about the more complicated aspects that may get passed on, and you're stopped in your tracks.

For me, my concern was about passing on polycystic kidney disease (PKD).

I was 17 years old when I received my PKD diagnosis.

My mum has PKD, along with three of my aunts and uncles, so it was no surprise when my name was added to the list. I knew there was a 50/50 chance I had it; in fact, I could already feel my enlarged kidneys as a teenager, and the ultrasound was merely confirmation for me.

In my family, growing up, PKD was discussed openly but not often. As a child and teenager, I watched my mum live with the disease. She took a very proactive approach to her health, and did her best to stay positive. I learned a lot from her, and realized at a young age that I would live a good life regardless of this diagnosis, if I took care of myself and worked on fostering a strong mindset.

In my twenties, I was somewhat in denial about my chronic illness, and did well at hiding it out of shame. I had a lot of processing to do!

Ciara_6.pngI was very private about my health until I met my husband. He was so supportive and accepting of my story, and helped me to feel empowered on my journey. He was the first person I really opened up to about this disease and what it could mean for the future (and how there was a 50/50 chance it would be passed down to our kids).

Looking back, those open and honest conversations were really helpful as we began to merge our lives.

Honesty & awareness are important on this journey.

Before we were ever ready to start a family, we had many discussions about the power of genetics. We were both worried about PKD, but not enough to stop us from moving ahead with our plan to start a family. After all, my parents had me, and I've had a wonderful life so far. I also felt confident in the advances in medicine, and felt like there were worse diagnoses to have. Some might call this naive, but it just felt like optimism to me.

Ciara_4.pngRight from the get-go, I was open with my family doctor about my concerns, and she was very supportive. I was referred to a high-risk obstetrics clinic at Mount Sinai Hospital here in Toronto, where I received very thorough and thoughtful care throughout both of my pregnancies. I was fortunate to have fairly uncomplicated pregnancies and deliveries.

I chose to be very positive in my approach to all this, because we weren't offered an alternative. We were either going to have kids or not, and I couldn't imagine a life without a family.

I want to take a moment to acknowledge that there are IVF options to consider if you are looking to end PKD in your bloodline, but these options are not for everyone, nor are they easily accessible. Know that your choice is your business and you can start a family in the way that feels right to you.

In hindsight, I have no regrets (and that's the way it should be).

I think the key here is to do what's right for your family.

Ciara_2.pngFor us, we did what we could to be prepared. I received the absolute best obstetrical care, and we appreciated and enjoyed the entire process. We worked hard not to worry too much, because we'd made an informed decision to have a family, and excess stress would have robbed us of our joy.

For anyone in the PKD community who is currently family-planning, my best advice is to have lots of honest conversations. Get to know yourself, and seek to understand your dreams and fears. Chat openly with your partner, and advocate for yourself with your medical care team. The more informed you are, the more empowered you'll feel. Ask your doctor about your options, do your research, and connect with other PKD community members who have been through this stage of life recently.

I say this all the time, but it's an important message: community is imperative.

When I was navigating the challenges of starting a family back in 2016, I didn't know anyone outside my family living with this disease. So, I didn't have peers to turn to. I didn't have a sense of community or a place to go for first-hand advice, and I think this is crucial for young families. I also think that these families coming together in this stage will continue to lean on each other, as our kids grow and we continue to navigate different phases of life with PKD.

Ciara_3.pngI now have two young boys (ages 4 and 6) who are my world.

My kids may or may not have PKD. I have not had them tested and don't plan on doing so as long as they remain healthy. (When they are old enough, they can make their own decision to go down that road.)

My husband and I still have discussions about our kids' health and their future, but for now, our focus is on raising a healthy family. Like I mentioned before, worrying too much about the future takes away from our ability to enjoy life right now.

Besides, we can pass on more than just bad genes.

We all know that much of what we pass on to our kids is beyond our control.

With this in mind, I like to put energy into the things I CAN control, which means teaching my kids about how to take care of themselves with good nutrition and a supportive lifestyle. I speak openly to them about PKD and what I'm doing to stay healthy in general, so that I can lead by example. There is no stigma associated with having health challenges.

Taking a proactive approach to health and wellness is what my mum instilled in me, and it's something I'm proud to pass on to my kids.

Read Ciara's previous Voices of PKD story here on our website, or watch her video vignette on our YouTube channel. Earlier this fall, Ciara wrote a thoughtful blog about changing nephrologists, which led to her presenting at our 2023 PKD Summit on the topic of being your own best advocate. You can watch the video recording of that session here.

Ciara is a nutritionist and a passionate PKD advocate; you can find her PKD Wellness blog here, and she's on Instagram @pkd.wellness.

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