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In June 2018 I travelled back home to Mexico City to help my mom out as she was having hip replacement surgery. I was just over 4 months pregnant and feeling nauseated and intense heartburn all day long but I was still looking forward to goinghome for a visit. While I was there, I booked my 21 week scan and was excited to find out what I was having. I was sent to a doctor specializing in genetic disorders (out of sheer coincidence, she was just a good friend of my uncle who referred me to her). I was told I was having a boy, and the doctor suddenly began to really lean into my belly, muttering to herself things like “C’mon little man, turn”. It took FOREVER and when she was done, she said “come see me in my office”.

The doc then explained that she had seen a “shadow” on the ultrasound, right on my son’s left hand. “It could be nothing”, she said, “or it could be an additional digit. If it is, it’s likely nothing to worry about; extra pinky fingers are rare, but it would be extraordinary for it to be a genetic condition to worry about. He is healthy and wiggly in there. Best to let your doc in Canada know and see if they can catch a clear picture of the hands in the future.”

I flew back home a few days later; proceeded to joke about my 6 fingered child and generally put it out of my mind. All the other scans (including extras I was sent to, to try to see the hands), showed nothing extraordinary and so my pregnancy (and heartburn) continued. On November 20, 2018; I was sent for an urgent scan as I was already one week past my due date, my son had turned but somehow there was no sign of labor coming.

I didn’t return home.

What followed over the next two days was induction, one of those insanely long labors and when my son’s heart began to fail, an emergency c-section. It was about 7am and I was rolled into the OR on November 22. My husband was with me, and he gave me a play by play of exactly what my insides look like (as a paramedic, he is not easily phased; as his wife, neither am I). I remember it was all jokes and fun and games and suddenly…silence.

It was the heaviest, densest silence I have ever experienced. You could TOUCH the silence. The nurses and doctor rushed our son to the back and began working on him. My husband said “he was a weird color. He’s not breathing.”

There was a cry and a wail. To my ears it did not sound like a healthy baby crying. A nurse asked if my husband would like to meet his son and he went over. When my husband came back, he said “there’s something really wrong with him. He has no fingers, no toes, his face is all deformed”. I was given a glimpse of my son and he was rushed to NICU as he was not breathing well.

This was the start of our journey with Apert Syndrome. This is a rare genetic defect which results in several body malformations, including the fusion of fingers and toes, underdevelopment of the mid face, cleft palate, fused soft tissues (trachea is most common), heart defects, lung deficiencies; this in addition to an expected cognitive delay, speech delay and lifelong gross and fine motor skill issues. Over the next 5 days every specialty saw our child; some cleared him (important ones like cardiology. Hurray!) and some informed us we would now be “friends for life” (like neurology, reconstructive surgery, and a whole team for speech and a different one for swallowing).

Tiberius is now almost 5 years old. He has started kindergarten, he loves marble runs, public transportation, coffee and tea and going down slides. He used a walker to learn to walk until he was 18 months old; he wore AFO’s until he was 2; he was diagnosed with Autism at 3 and Tethered Cord Syndrome at 4. He’s had 9 surgeries and we are waiting on at least 3 more in the next year. His first word was “Batman” at 12 months old and he said nothing else until after he turned 3; he has lost some of his desire for speaking recently and is fluent in both English and Spanish. He knows how to get the blood pressure monitor working at the hospital; he recently reached the milestone of being able to climb 4 steps on his own; he wants to work in the ambulance like his Papa; he loves his SLP and has the biggest soft spot for his paediatrician. He has spent about half of his time at the Ronald Macdonald House in Saskatoon and always, always gets a donut from Tim Horton’s.

Our biggest challenge is not the medical; that’s just life and our normal. Our son is a wonderful, smart, funny and loving child who has a facial difference. Even after prepping his classmates on his differences, two children still called him “weird looking” to his face when they saw him and another handful simply left the table while staring. Our uphill battle is advocacy and inclusion (and sleep, does anyone else survive without sleep?).

He is our Apert Warrior; my amazing little gubber and his Papa’s jelly-bean eating sidekick.

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