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Olivia

JoAnn Craig

When my husband Colin, who has hemophilia, and I decided to start a family, we both breathed a sigh of relief upon the birth of our first daughter and then, when the second girl was born, we figured we were free and clear of any bleeding issues except for dear ol’ Dad. This was not to be. Three months later we were wearily plodding through a day of colic with Olivia, or so we thought. I figured a warm bath would help, only to discover an egg-sized bruise on the back of Olivia’s hand. As soon as Colin saw her hand, he deflated as if sticking a pin in a balloon. “That’s a bleed. She’s got hemophilia.”

Upon our arrival at our local hospital in Charlottetown we were met with scratching of heads and puzzled faces, but also with co-operation. The wheels were immediately set in motion, and top-notch quality care for our baby was well under way with an official diagnosis and treatment. At the outset, Olivia had to endure being pinned down long enough to infuse her (which on occasion led to a bleed) and very soon learned what was coming once she was laid down in this hospital room. This only lasted until she was 9 months old, when the decision was made to implant a Port-a-Cath. It was all overwhelming enough to even a battle-hardened veteran like her father, but to have to pass your baby along to waiting surgeons was heart-wrenching. As it turned out, it was the best decision we ever made! Home infusion eased the load for both Olivia and her parents with twice weekly infusions with which she is now old enough to assist.

Along our journey of raising a girl with severe hemophilia, we have met some wonderful people involved in the cause: those involved in medicine by choice, and those of us who are becoming professionals by being thrown into it head first! We are grateful for our GP, pediatricians, hematologists and their teams, and for a special lady in Medical Genetics at the IWK in Halifax, N.S., who has taken on the phenomenon that is the Craig family and has lovingly coined it “Finding Nemo”. This, of course, refers to her research determining not only how a girl inherited severe hemophilia, but how she inherited it from her father, who in turn inherited it from his mother! True Story! Nisa has met with us on every hospital visit and somehow manages to explain her progress thus far in our genetic make-up, (thanks to contributions made by family members) going back to our distant relatives, telling us why we are the way we are... well, scientifically speaking anyway!! We all anxiously await her results, perhaps finding a way to unshackle the ball and chain that cause pain to so many, and weigh us down both emotionally and physically.

Olivia is otherwise a typical 4-year old who is unrelenting in chasing her big sister Alexis, who is a huge part of our support team. She enjoys Barbies, swimming, the beach and playing outside. She has no problem finding a friend to play a game HER way, as that toothless grin wins you over every time! She gets a kick out of telling anyone who asks how she lost her two front teeth. “It’s Daddy’s fault. He put me in a box!” Hmmm? She feels no need to explain that when she had a bleed Colin put her in a big box to play quietly in (we all know children like to play with a box more than a toy) and was smiling when the box tipped over. Colin just smiles, shakes his head slowly, looks skyward and knows that payback for his own childhood shenanigans is going to come full-circle!

- Spring 2006