this story was written by Susan Van Der Ende, a committee member with the Butterfly Run Vancouver
My infertility journey has been long and lonely and paved with sadness, some joy, grief and lots of loneliness.
It all began in my 20’s when I found out I had endometriosis. I had incredibly painful periods that would ruin a week a month. At 25, I had a laparoscopy to remove giant cysts on my ovaries that were causing pain and bloating. The laparoscopy was converted to a laporotomy because the endometriosis was severe, wide spread and the cysts were fused between my ovaries and fallopian tubes. Unbeknownst to me, when the cysts were removed so were part of my ovaries which eventually caused premature ovarian failure.
This surgery led to an immediate referral to an IVF clinic and the suggestion that if I wanted a family, I should do it now. I was 25 and not ready to be a mom. And at that time, egg freezing technology was very new and not available in Canada. After that, I did everything to preserve my fertility. I took Lupron, I changed my diet, I exercised and tried to be as healthy as I could be. When I finally felt settled and married and was ‘ready to be a mom’. We tried the old fashioned way. I hoped my body had changed and I would get pregnant but month after month, I was disappointed.
We finally tried IVF but by that time my AMH hormone was in the toilet and I had premature ovarian failure. The IVF cycle was cancelled because my ovaries couldn’t be stimulated The IVF clinic suggested using donor eggs. We gave up instead. We built a business that was ‘my baby’ and kept me totally wrapped up and busy until I kinda imploded. After some counselling and re-focusing we were able to wrap our heads around the concept of using donor eggs for IVF. We found an altruistic donor in Canada and began a cycle. It wasn’t without issues and problems and came at an insane cost but we transferred our first embryo and then welcomed our miracle son in 2016.
I was now 42. When he was 9 months we knew we wanted a sibling so we transferred our 2nd embryo. It failed. The third and final embryo failed as well. We were devastated and felt bewildered wondering what do we do now?! Our egg donor answered and she did another round of IVF resulting in 6 embryos this time. The first embryo transferred split into identical twins. We were sooooo excited!! 30 weeks later, baby A died for no known reason. I carried both our boys for another 6 weeks until I delivered them both. Our sons were born in 2018- one into our hearts and one into our hands. We still had 5 frozen em-babies so in 2020, we transferred another embryo. It became a chemical pregnancy, so did the next one. The third try I was pregnant with what I figured would be our last baby. Our baby girl surprised us at 30 weeks with her arrival. She was perfect in every way except she couldn’t breathe. She was incredibly sick with tiny little lungs and was put on a ventilator. She was feisty and she fought and her lungs grew and so did she. But it was never meant to be. Our baby girl was born with a unique form of Dominant Spinal Muscular Atrophy thanks to a damn gene mutation (BICD2) that she didn’t inherit. She passed in my arms at 7 months + 1 day. And STILL after all of this, we STILL long for our next baby and the family we always dream of.