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Parenthood Tears & Joys: Infertility and Medical Mysteries

28. January 2017

Infertility

We have three beautiful daughters aged sixteen and soon to be thirteen year old twins. It is hard to imagine where the past sixteen years of parenthood has gone. We are quite a typical family with two working parents in pursuit of financial stability and freedom from debt as we embark on funding our kids going to university soon (ugghhh) and for us to retire comfortably in about a decade, hopefully, after we work our butts off in the meantime to fund these lofty plans!

 

While we have always been fairly fortunate to have our health and much happiness, our story didn't always have such sweetness and easy days. I had fertility challenges with conceiving our first child in my late twenties due to polycystic ovarian disease (PCOD) and then again when we tried to conceive our second.  I underwent fertility treatment for both pregnancies. Our first pregnancy resulted in a healthy baby girl and our second pregnancy resulted in triplets, and then twins as one of the eggs didn't develop into a viable fetus. This is what we were dealt and we knew we were fortunate to conceive not once, but twice. We were thrilled, nervous and shell shocked all at once. We never anticipated we would fall into the 30% that conceives multiples on fertility drugs. Ok here we go! We got this. 

 

While having a routine ultrasound at the twenty-four week mark, I was sent immediately  to Mount Sinai as a high risk pregnancy, and put on bedrest. One of my twins was "failing to thrive" at less than one pound and was at risk to not survive due to a cyst that was on her placenta and preventing her from receiving any nutrients. My main job now was to rest and fatten the babies up. Ben & Jerry's here I come through many tears and much fear of losing one of the twins. We were scared and devastated at the thought although I am happy to report that the bedrest worked. Not only did I make it to thirty-five weeks to have fully developed lungs and healthy babies, but the placental cyst disappeared miraculously and without any medical explanation. It truly did turn from a nightmare into a joyous occasion and everything was exactly as it should be. 

 

But wait. Delivery day was a scheduled C-Section.  Our baby girls were delivered and all should have been wonderful, and it was, until the paediatrician on duty came to see us and asked many odd questions about the pregnancy and our health histories. Within twenty-four hours, our world was turned upside down yet again. Our baby daughter Maya had an odd shaped, elongated head which we chalked up to being jammed under my rib cage for months. We were referred to Sick Kids Hospital in Toronto to investigate what later turned out to be Bicoronal Craniosynostosis, meaning the sutures of her skull were prematurely fused together on both sides and her soft spot was in the middle of her forehead. An incredibly rare birth defect, with unknown origins or determination if genetic or not.  We were devastated. Here we go again. The what if scenarios were killing us. 

 

At ten months of age, Maya underwent complete cranial reconstruction surgery whereby they cut open her skull and pieced it back together like a puzzle with many missing pieces, in order to reshape her. The consequences of not operating was that her skull formation could have put pressure on her developing infant brain and caused developmental delays with long term impairment.  My entire maternity leave was spent worrying about her surgery instead of enjoying time with my babies.  We worried constantly about what would happen if we lost her due to surgical complications or an infection.  The day finally came and after about six hours of surgery, her surgeon was able to deliver the news of success and introduced us to our new baby girl. We couldn't believe our eyes as we walked in and saw a baby girl we didn't recognize. Underneath the swollen shut eyes was a baby that looked entirely like a new person to us. It would take weeks, if not months, for us to see the swelling go down and for us to see her new look literally "take shape".  Maya had an incision from ear to ear over the top of her bald little head. I was incredibly self conscious of the many stares she received and thus she wore a hat everywhere we went for the next year, except when at home with family. I felt very judged as though people thought she looked scary or damaged. In hindsight, I am sure any stares or looks were more ones of sympathy and curiosity as to what could possibly have caused this massive incision on an infant. But at the time it is hard to not feel self conscious and question people's thoughts and intentions. 

 

Now as we embark on celebrating our twins' thirteenth birthday in a few weeks, it is amazing to look back on our journey.  When we were awaiting surgery and searching for answers, I found a lot of comfort in speaking to and reading about other parents whose babies had gone through similar surgeries and circumstances.  Thus, I wanted to share this story with other parents who may be going through similar issues right now or in the future as encouragement to stay strong, persevere and not lose hope in the face of these challenges.  

 

The other tidbit of wisdom I wanted to share is that when I am asked when the pivotal moment was that I turned to natural medicine and healing, I share that I used it to help me conceive, concurrent with fertility treatments I also saw a Naturopathic Doctor to whom I credit my pregnancy success.  I also turned to natural medicine through a healthy lifestyle while going through this ordeal with infertility and our daughters medical condition. I realized that life is too precious to take it for granted and abuse our bodies. This process helped to spawn a passion for natural medicine, clean eating and clean, chemical free and natural products. 

 

I have a huge sense of gratitude to the doctors and nurses at Credit Valley (where my girls were born), to Mount Sinai for taking good care of me during my high risk pregnancy, and to Sick Kids Hospital (and specifically to Dr. Forest and his team) for looking after my girl to ensure her success along her journey. She is now a gorgeous, soon-to-be thirteen year old and the trials of her conception and birth story seem like such a distant memory.  But I must say, every now and then I do sneak a peek at her ear to ear scar as a reminder of how strength, love and faith can get us through anything. 

 

As a final note, we still do not know what caused Maya's condition and after thirteen years we have been told that genetics testing may very well point us to the answer as medical advances are made. We will eventually get back there and have genetics testing again for her sake and to finally know the cause and the medical mystery behind this. 

 

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