Huntington Disease, Infertility and Trying to Become a Mom

When I rolled out of bed that Saturday morning my entire body was aching. A line of bruises ran along my swollen stomach and I felt dizzy for some reason. This must be a weird side effect from the medication, I thought to myself. Even though I only had thirty minutes to get ready I found it hard to get moving. I felt a familiar deep vibrating ball of energy in my chest. That was where my depression sat. It was a constant unwanted companion that I couldn’t seem to get rid of no matter how hard I tried. I got dressed and managed to eat a piece of buttered toast before leaving for the fertility clinic. My husband was working in the basement with the plumbers so I had to go by myself that morning.

I arrived at the clinic as soon as it opened but I was still there for an hour and a half. I spent most of that time sitting on an uncomfortable moulded plastic chair in the dim waiting room, watching the headlines scroll across the screen on the 24-hour news channel. I was waiting for my turn to get a blood test and an ultrasound before meeting with the doctor. I was anxious to find out how our second round of in-vitro fertilization (IVF) with PGT-M was going. PGT-M is a test that can be performed on embryos to determine if they have a genetic disease.

I was diagnosed a gene-positive for a Huntington Disease (HD) two years earlier. HD is a degenerative neurological condition that causes cognitive impairment, uncontrolled movements and emotional issues. As a carrier of the gene I know I will develop the disease but don’t know when the symptoms will appear. Along with my diagnosis came the knowledge that any child I conceived had a 50% chance of inheriting the disease from me.

After receiving my test results I became terrified of my future and I fell into a deep and long lasting depression.

I questioned whether my life had value if I was just going to get a horrible disease and die. I felt that when I got sick I would become a burden to my family. I was worried that my husband would leave me and I would end up alone and unloved for the rest of my life. Most nights, as I was trying to fall asleep, I would lie in my husband’s arms crying. “Are you sure you still love me even with HD?” I would ask him.

“Yes of course I still love you” he would always reply as he wrapped his arms around me even tighter.

My diagnosis was so all-consuming that I couldn’t see myself as anything other than someone who was going to get HD. I struggled to figure out how to move on with my life including what to do about having children. Would it be morally correct to have a child when there was a 50% chance of passing on the disease? Could I live with the guilt if my baby inherited HD from me?

Amidst all that anguish, depression and loss, my husband and I decided to have a baby despite the risk. If our child inherits HD there might be a cure for it by the time they grow up, I said to comfort myself as we tried to conceive month after month after month with no success.

Eventually, we sought the help of a fertility doctor. We tried fertility treatments that were as minimally invasive as possible starting off with cycle monitoring, inter-uterine inseminations and more. Unfortunately, none of the treatments worked and I was dealt a second medical blow in a short period of time, undiagnosed infertility. The only option left to try was an IVF with PGT-M.

When I finally left the fertility doctors that Saturday morning I was still feeling dizzy. I went through the drive-thru on the way home and picked up coffee and donuts for the guys working in our basement. Immediately upon opening the front door I smelled sewage coming from downstairs. The pungent scent was making me gag. Turns out that the plumbers had discovered a cracked sewer pipe in which they were in the process of fixing. I quickly placed the coffee and donuts at the top of the stairs and yelled down to let them know it was there before retreating back outside away from the smell. I slumped down on the front steps resting my head on the brick wall beside me, exhausted and dizzy. My coffee and donut sat next to me untouched. I probably shouldn’t have been driving today, I thought to myself. I didn’t ask my husband for a ride because that would be like admitting that I couldn’t handle it. As soon I acknowledged how hard it was I wasn’t sure if I would be able to keep doing it.

I received the results of our second IVF on a cool fall afternoon. I had the day off and was puttering around the house, doing the laundry, vacuuming and cleaning the dishes. I was anxiously awaiting a call from the clinic nurse with our pregnancy test results. When the phone rang that afternoon I was almost afraid to answer it. “Your test has come back negative. I am so sorry” she said.

“Ok. Thank you.” I managed to squeak out before hanging up the phone and collapsing onto the bed sobbing. I knew at that moment that I wouldn’t be able to continue doing fertility treatments. I was physically and emotionally drained. My husband and I were faced with another life-altering choice. Did we want to live childfree or try adopting to create our family?

I always knew that I was meant to be a mom and I didn’t want to give up on my dream. After giving it a lot of thought we decided to try adopting.

Miraculously, five and a half years after we had started trying to have a baby we created our family through adoption.

When I was diagnosed as gene-positive for HD and infertility I didn’t understand how I could ever be happy again. It was impossible to foresee a time when the pain would diminish. But I knew that I didn’t want those medical issues to ruin my life. I had the desire to find happiness again and made it my goal. I belonged to multiple support groups, I went through individual counselling, and I read memoirs about people struggling with similar things. I was constantly challenging my own thoughts and beliefs so I could keep pivoting until I made my dream of becoming a mom come true. Even once that happened I still had to do a lot more work. To learn to see the positives in my life, to view myself as more than my disease, to understand that my life has value even when I start to have symptoms of HD. It has been over ten years since my HD diagnosis and I am finally in a place of contentment.

I know that a lot of people are afraid to speak up about genetic diseases, infertility and depression. I kept those things a secret for a very long time because I was afraid of the consequences. I am sharing my experiences now because I want others going through similar things to know that they are not alone. I have shared my stories on sites like Themighty.com, CanadaAdopts.com and huntingtonsdiseasenews.com. I have also written a memoir about my path to parenthood which I am currently looking for a publisher for. If we don’t talk about what it feels like to live with a genetic disease, to manage a mental health crisis, or to deal with infertility it can be very difficult for others to understand what we are going through.