Maddison is defying the odds.
Maddison Blitvitch sits on her trike, with a huge smile on her face, and a bright pink bow on her head. At first glance you know she’s a special child. She is a bright, giggly and boisterous toddler who is part of an exclusive club.
Madison is thought to be the only child in New Zealand born with a rare genetic disorder called Pfeiffers Syndrome. And as if that is not tough enough she also has life threatening heart defects. At just 20 weeks pregnant Doctors told mum, Rachael that things were not looking good and she should consider terminating her pregnancy.
But Rachael had different ideas.
“There was no way I would give up on her – even if she lived for two hours or even two weeks, I had to give her a fighting chance.”
Plucky little Maddison turns two in November, and has defied the odds. “Her courage and fight fills me with such pride every single day. She has been such a blessing and I can’t imagine life without her.”
Rachael calls Maddison her ‘surprise baby’. She was 41 when she discovered she was three months pregnant. With three older children and three grandchildren, having another baby was the furthest thing from her mind. But now she could not imagine life without her.
“She has given me a whole new appreciation for being a Mum. She’s opened my eyes to a different side of life and taught me that every day you have to live life to the full. I think I need her more than she needs me”
Maddison was born with severe cardiac abnormalities - in laypersons terms the left side of her heart was smaller than the right and just didn’t work properly.
Doctors gave her just a 10% chance of surviving surgery, but without the surgery she had no chance at all. Rachael says her wee girl proves everyone wrong time and time again. She not only survived the operation, but her heart murmur has gone, the left side of her heart is growing and she is getting stronger and stronger every day. Rachael laughs that Maddison is the one teaching the medical professionals!
But Maddison’s next obstacle is a big one. Cranial surgery. ‘She has already had a plate inserted in her head to reduce the fluid build-up, but now we need to look at major surgery to re-shape her head. At this stage all the surgeons are reluctant to carry that out.” The medical term for Maddison’s condition is Pfeiffer type cranial synostosis with glover leaf skull and mild face hypoplasia.
“If the world wasn’t such a cruel place, Rachael explains, I would leave it. But Maddison deserves a chance to live a normal life, and to be treated normally”. Rachel says the hard thing is people’s reaction when they see her girl. “I’ve got so used to the stares and the pointing, but my other children are very protective.”
For Rachael, a single mum, the journey has been a long one, but her enthusiasm and positivity is an inspiration.
While Maddison can’t walk or talk, she and Rachael are learning sign language. And her trusty little three wheeler enables her to get around. Rachael says despite all of her disabilities, she just never complains.
“She has a wicked sense of humour, every day is a laugh. She has taught me how to focus on the future and never reflect on the ‘what ifs’?
“I want to share Maddison’s story with others, and let people know never to give up hope. It has been lonely, but without the support of my other children, friends and organisations like Heart Kids, it would be so much more difficult.”