Christina defies the odds

Christina-croppedChristina was born in Ottawa, Canada in 1998. A miracle for her parents Tania and Roman who were told they were likely never going to be able to have children. Sadly, their initial joy didn’t last long enough. Tania and Roman were given the devastating and shocking news that their daughter had multiple medical conditions, and that many were life-threatening.

Christina’s long list of conditions included an underlying genetic condition called Fanconi’s anaemiascoliosishydrocephalusa hole in her heart, a pelvic kidney, a detached oesophagus, a missing radius in her right arm and missing thumbs on both hands. She weighed just four pounds.

Fanconi’s anaemia is known to display in many different ways, and those with more physical abnormalities typically have a worse prognosis. Christina’s form was rare and severe and doctors believed she would never be able to walk or talk, and that it was likely she wouldn’t live to see her third birthday.

When Christina was just two-days-old Tania and Roman were asked to make an unimaginable decision about whether or not they would like doctors to intervene and attempt to prolong her life, or allow her to go.

“We decided that we wanted doctors to do everything they possibly could to save Christina. We had fought long and hard to bring our little miracle into the world, she was our precious gift, and we weren’t ready to say goodbye. We were in for the fight,” said Tania.

At three-days-old their tiny baby girl had her first surgery – a 17-hour long reconstruction of her detached oesophagus. She then spent the first year of her life in hospital in Canada. Finally, at 18-months-old Christina was well enough for Tania and Roman to take her on holiday to Australia to visit her grandparents and other relatives.

“We were so excited to finally be able to take Christina to meet her extended family, and experience life away from hospital, if just for a little while,” said Tania. “Unfortunately, that time didn’t last very long.”

Once again, the family’s joy was cut short when Christina became critically ill and was unable to make it home to Canada. It was then that the family experienced The Royal Children’s Hospital (RCH) in Melbourne for the first time.

Christina was admitted to the RCH and was placed under the care of RCH oncologist Dr Karin Tiedemann. “It was then that we were told that our girl would one day need a bone marrow transplant to survive,” said Tania.

Two-years-later the family received another miracle, when they discovered that Tania had fallen pregnant again. Knowing that Christina was in need of a bone marrow transplant the baby was tested to see if he might be tissue compatible with Christina. He was found to be a perfect match. When little Thomas was born, the blood remaining in the placenta and cord which contained blood forming stem cells that could be used as an alternative to bone marrow, was collected and frozen for future use. Months later Christina received her brother’s ultimate gift – a lifesaving cord blood transplant. Christina then became the first Australian child with Fanconi’s anaemia to survive a life-saving cord blood transplant from a perfectly matched sibling.

“We were so fortunate to have Dr Karin Tiedemann, who had the expertise to trial a relatively new procedure. It saved Christina’s life,” said Tania.

“We also feel indebted to so many other staff members at the RCH, including Professor Tony Catto-SmithProfessor Paul MonagleMr Patrick LoMr Ian Torode, the nurses, allied health staff and all those who work in patient support services. We can’t thank everyone enough for their ongoing care at the hospital,” said Tania.

“Having the continuity and longevity of staff and services at the hospital has been a huge benefit,” she said.

For Christina and her family, the fight wasn’t over there, her treatment continued and she faced many other health battles, including a tumour in her liver. Then at 13-years-old Christina was diagnosed with Chiari syndrome. Fortunately, a surgery performed by RCH neurosurgeon Mr Patrick Lo, cured the condition, but it was another huge challenge to face for this brave young girl.

Christina is the eldest child in what is now a big and fun family. She has two brothers Thomas and Mykola and a sister Sophia, who are all a huge support to her.

“At times it’s been hard for Christina’s brothers and sister, because so often most of our attention has to be on Christina, but we are so proud of our children and the way they’ve coped with these challenges over the years,” said Tania.

“We’re all thankful for the community support we receive through organisations like Very Special KidsHeartKidsCamp Quality and the Make-A-Wish Foundation. Over the years they have cared for our whole family and we’ve been given some wonderful opportunities to go away together for special family time,” she said.

Despite Christina’s illnesses and complications the family have one very clear motto ‘we can do everything’. “We have travelled all over America and we love to go camping. Roman has found ways to make the things we enjoy doing possible – like using solar panels to make sure there is electricity overnight so Christina can receive parenteral nutrition (tube feeds),” she said.

Now 15-years-old Christina has beaten the odds. Not only has she survived well past what was ever expected, she attends school most days, plays piano and loves music, Scouts and gardening. However, her health challenges continue. Just this year Christina underwent cataract surgery and was diagnosed with type 1 diabetes.

Christina is also an active member of the RCH Chronic Illness Peer Support (ChIPS) program, where she enjoys the company of peers who share their stories and understand hers. ChIPS Program Facilitator, Meagan Hunt describes Christina as a lively and fun teenager with lots of amazing stories to tell.

With an abundance of courage Christina has been through over 50 surgeries, as well as the cord blood transplant, and has been cared for by 14 different specialty departments at the RCH. She continues to have surgery every three months at the RCH to widen her oesophagus, which constantly narrows due to scar tissue.

Many doctors at the hospital have cared for Christina since she was a toddler, and Tania says the hospital has become their second home. “The RCH community is like extended family to us,” she said.

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