Back in 2012, Arna Suttie made the decision to save her unborn baby’s stem cells. Whilst she hoped the cells would never be needed, she wanted to give her child every chance of a healthy life. As it turned out, that decision helped Arna improve her baby’s life in a brave and emotional journey that has been captured across New Zealand media.
The unexpected
Although her pregnancy had been trouble-free and the birth straightforward, from the moment little Phoenix was born in 2012, she knew something was wrong. Phoenix arrived blue and shivering and was quickly taken by the medical team for a series of tests.
The day they were called into the consultant’s office, Arna and Jason’s lives were shattered. At some point during the pregnancy or birth, Phoenix had suffered brain damage. The experts shared their diagnosis as hypoxic ischemic encephalopathy. And when Jason asked if his baby son was ever going to be able to walk or talk, he was crushed by the response “the chances were extremely unlikely,” they said.
Over the next few months, more tests were performed on Phoenix. Each one seemed to reconfirm that he was unlikely to ever walk or talk. Even in the early days, he was late with some of the classic milestones for new born babies. It took him a week to find his lungs and cry. They waited a very long 3 months for his first smile.
Fighting for their child’s wellbeing with his own cord blood stem cells
Fortunately for Phoenix, he comes from a family of fighters. His dad, Jason, was the World Kickboxing Champion six times and now runs a martial arts gym in Auckland. With everything in life, not just his sport, Jason believes that when you get hit, you get up fighting.
That fighting philosophy has powered the family forwards as they explore different therapies to help Phoenix. In a TV3 interview, Arna was clear about their journey “He can’t live with us not trying.” Every day involves a full schedule of therapy yet progress has been slow. But the most exciting developments came when they were able to use his cord blood stem cells.
Cord blood re-infusion gets the go ahead
Arna and Jason spent a lot of time in the early months learning about the experiences of other parents and children with similar conditions. Their eyes were drawn to studies being conducted in America at the Duke McGovern-Davison Children’s Health Center in North Carolina. Experts were running trials to infuse children with Cerebral Palsy with stem cells taken from the child’s cord blood.
Arna got the chance to take him over to North Carolina with his cord blood. Outside of the trial, lead consultant Dr Joanne Kurtzberg had agreed to infuse Phoenix with his stem cells. It gave the family renewed hope.
Throughout it all Arna shared her experience with family, friends and supporters through Phoenix’s Facebook page – The Phoenix Files – including photos of Phoenix during the infusion on the 11th December 2013.
Dr Kurtzberg successfully introduced 229 million cells taken from Phoenix’s cord blood – leaving 58 million for use at a later date.
Exciting progress for Phoenix after his cord blood treatment.
Within weeks, the Suttie house was full of smiles. Phoenix had begun to make some significant progress. Whereas previously he had little or no control of many of his own muscles, he can now move more easily and is making laughing noises.
Arna shared some of his progress on Facebook:
Recently we have noticed three things which are a pretty big deal for us. He has been moving forward on the flat floor, he has been making a laughing sound and he has been smiling and reacting to the puppets on his DVD.”
But best of all, he is now able to get up and stand on his own, steadying himself with his arms. It has only been for a few seconds at a time but it was enough to get everyone very excited.
The changes in Phoenix following his stem cell infusion have delighted Arna, Jason and all their family, friends and supporters. Over the coming months, we’re excited to see the progress little Phoenix will make.
Giving your baby a fighting chance
No one wants to think that something is going to go wrong with their baby – but if the worst does happen (as it did with Phoenix) then having access to your child’s stored cord blood can make a world of difference.
Thousand of families in NZ and millions world wide have stored their children cord blood so that they can benefit from the power of their unique, perfectly matched stem cells when they need them.
You need to register with CordBank before your baby is born to take advantage of this potentially life saving step for your child – now and into the future.
Enrolling with CordBank is simple and secure – you can do it all on line at www.cordbank.co.nz/register/payment-options/. Interest free payments are available for families who wish to pay the balance over 6 or 12 months.
This post was sponsored by Cordbank New Zealand
