Author: Rebecca Cuneo Keenan

Irene’s new favourite place to be,

Is up the one step to the back deck,

Clinging to the open screen door.

She is so proud.

Can you tell?

I have a friend named Gillian whose smile is as big as a smile can get. We met in high school drama class where I sought a channel for my angst and she found an outlet for her inner comic. We were school friends, though. So when she went to York University and I attended the U of T (by way of a year off working at the Second Cup), we drifted apart.

Chances are we would never have talked again if we hadn’t found one another on Facebook. When we did, during the summer of 2007, we were both married with toddlers living on opposite sides of the city. We soon found that even though our attention had migrated from Ibsen to toilet training, we still enjoyed each other’s (virtual) company. We’ve exchanged regular messages ever since.

On March 3rd of 2008, Gillian was one of the very first people to find out that I was pregnant with my second baby. The very next day she confided that she, too, had just found out she was pregnant. My due date was November 3rd, hers was October 31st. How exciting!

The parallels ended there, though. I began receiving prenatal care from the same midwife who attended Colum’s birth and my biggest decision was whether to plan for a home or hospital birth. Gillian had a history of missed conceptions, infertility drugs, and a miscarriage. A bit of light bleeding early on cemented her concerns and she was hell bent on receiving every test she could.

I opted to skip the 12 week ultrasound and genetic screening test. Gillian’s test indicated some abnormality and she went on to have an amniocentesis that confirmed that her baby had Triple-X syndrome. (A condition in which an extra X chromosome is present in a female with relatively minor symptoms.) It’s a girl! My 20 week anatomical ultrasound confirmed the presence of a seemingly healthy baby. (We didn’t ask about the sex.) Gillian’s 20-week scan revealed an extremely rare and often fatal heart condition. This is not connected with the Triple-X and neither condition is hereditary. Two rare genetic flukes in the same baby — the first the doctors had heard about.

The odds of this baby surviving were worse than even, as I recall. She would need heart surgery upon delivery and then another at four months and another at two years. The chances of her surviving any of these surgeries were slim. And then, best case scenario? Nobody would say. Maybe — maybe — she might live to be fifteen . . . if she survived those early surgeries, but that was a big “if”. Terminate, they said. End this pregnancy now.

She was — we were — already well over 20 weeks by the time their diagnosis came in. That’s over half-way there. My belly was big and my baby was kicking and turning and very much a little person within me. And Gillian weighed her options carefully. She consulted with friends and family, with her husband and her priest. She asked me what I would do. I said that I had no idea and that she should listen to her heart. She decided that she wanted to give this baby a chance. I probably would have done the same thing.

Thus started the endless train of specialist appointments and Gillian’s crash course in right isomerism. I had put Colum in daycare and began working for a temp agency to earn enough hours to qualify for maternity benefits in order to replace the income I earned waiting tables at a busy downtown restaurant. It so happened that one of my placements was at a hospital right next to Mount Sinai, where Gillian and I both planned to deliver.

We met up for lunch after one of her appointments and it was the first time I’d seen her in ten years. But there she was with the same loping stride and enormous smile. (Have I mentioned how all-encompassing her smile is?) We had Chinese for lunch and over-ordered the way only ravenously hungry pregnant women with no place to put the food can. She looked fantastic and her spirits were good. She was going to have this baby and love it and hope and pray for the best.

On October 30th, 2008, Gillian’s doctors determined that her placenta had just about had it and that she was ready to go. They admitted her to the hospital for induction and got a bed ready for the baby at the Hospital for Sick Children across the road. Gillian had a fairly straight-forward and easy labour and delivery and got to hold her baby Jayla before she was whisked through the underground tunnel to Sick Kids. (Who says we aren’t sci-fi in Canada?)

I’m a bit foggy on the details in the days immediately following Jayla’s birth because I went into labour the very next day. I managed to arrive at Mount Sinai to meet my midwives a full hour before my baby girl was born. We were both doing well and I was back home a mere three hours after Irene was born, resting and nursing, resting and nursing in my own bed.

I took the kids to visit Gillian and Jayla in the hospital after her  first surgery and met that precious little baby girl. She was a lot smaller than Irene and more fragile and had much more hair. (We don’t start growing hair in my family until well over a year, apparently.) I nursed Irene while Gillian expressed breast milk that then needed to be thickened and then carefully bottle fed to Jayla lest she aspirate on the milk. But there she was, a perfect little baby girl. Soft and precious and so very well-loved.

She was sent home and Gillian carefully and diligently nurtured her baby. There was a steady rotation of nurses and  occupational therapists through the home to keep tabs on Jayla. And there were her audio-visual appointments. (She was profoundly deaf, it turned out, too. Perhaps a casualty of meningitis picked up during her hospital stay.) It wound up taking longer than the estimated four months for Jayla to gain enough weight for her second surgery.

Gillian and I met for lunch sans children one afternoon shortly before the girls turned six months. We caught up and filled in some more gaps from those missing years when we’d lost touch. She told me about Jayla and how happy and smiley she was. We discussed long-term child care options and we talked about our three-year-olds. We left, as always, with plans to get all the kids together — after Jayla’s next surgery.

Jayla had her second surgery and she was in the Hospital for Sick Children for one hundred days. I kid you not. One hundred — most of which were in the critical care unit. She was so swollen after her surgery that they could not close her chest for well over a week  which allowed for an infection to attack her intestines. She went in for emergency intestinal surgery and I was grim. “It doesn’t look good,” I told my husband. Slowly, eventually, Jayla did pull through. And just two weeks ago she was discharged from the hospital and sent home to get stronger.

And then today she died.

Today I pushed my kids around the neighbourhood running errands. We went to a new playground and Irene was cranky because she’s teething and has a cold. Her nose was runny and I thought it was a drag. But my baby girl is sleeping in her crib right now and Gillian’s is gone.

My three-year-old will have to learn (again) about picking up his toys tomorrow. Gillian’s three-year-old will have to learn about death.

And it makes me angry. It does. Because babies shouldn’t die and I don’t care what the ultrasound showed. Babies who smile and laugh and cuddle and snuggle should not die.

And she was beautiful. She was a beautiful baby girl and the love she received was only equaled by the love that she gave. She filled the hearts of her mother and father and sister and grandparents and aunts and uncles and cousins with a love that was not there before. She graced my heart and yours with a love that we otherwise wouldn’t have known. She fought to feel loved and she did. Her mother was by her side each and every day, ensuring she got the best possible care. And when her heart stopped beating, it held onto that love.

Every day that Jayla lived was a gift. Every day is a gift right now, not for what it could be or where it might lead, but for the miracle of life and love that is with us right here, right now.

Thank you, Jayla, for reminding me.

Update: When you donate to the Sick Kids Foundation in the memory of Jayla DeSouza the money will be split between research for congenital heart defects and hearing loss. Please give generously.