Louise and Michael Conn never imagined that banking their baby’s cord blood would prove to be the best decision of their lives – one that would give their daughter, Georgia, who suffers from cerebral palsy, a better quality of life.
SPENDING $250 EVERY year of your child’s lifetime to store a small packet of her cord blood may seem like an unnecessary expense; then there’s the one-time $1,400 cord blood collection fee. But for Louise and Michael Conn, this decision paid dividends for their elder daughter Georgia, who was born with cerebral palsy three years ago. “Thank God we kept her cord blood,” says Louise, 36, an Australian freelance graphic designer who’s been living in Singapore for the past five years with her 38-year-old bank director husband.
On Sept 8, 2009, Georgia became the first – and only – person in Singapore to receive her own cord blood stem cell to treat cerebral palsy. The one-time blood infusion was done by neurosurgeon Dr Keith Goh, of the Siamese twins separation fame. Cordlife, Georgia’s cord blood bank, had set up the initial meeting between the two parties. The 30-minute blood infusion cost the couple about $10,000, including hospitalisation charges, but they didn’t go into it with rose-coloured glasses. They were fully aware that there was a possibility there might not be any outcome from the procedure, but at least the side effects were negligible as Georgia was taking in her own cells.
FLASH OF FEAR
A week before Georgia’s birth, Louise and Michael decided to bank her cord blood, even though their family doesn’t have a history of serious illness. “It’s one of those what-ifs, because you never know what’s going to happen in the future,” Louise explains.
But the future arrived sooner than expected. Georgia was stuck in her mother’s birth canal for three hours and started suffocating in the final half hour of her birth. After an induced-labour, Georgia was born blue and silentsomething Louise describes as “surreal”, since up to that point, everything had been normal and uneventful. “I thought she was stillborn,” Michael recalls. “It was gut-wrenching! When Georgia was later diagnosed with cerebral palsy, there was a flash of fear as I thought ‘What does this mean for us?"
RAISING A SPECIAL BABY
The Conns are potentially looking at a lifetime of palliative care for Georgia. Cerebral palsy is a brain injury where areas of the brain and brain cells are damaged or die due to a lack of oxygen to the brain. Patients typically have very poor movement and posture control.
Doctors told the couple that Georgia would never walk or talk, and advised them to keep her indoors. But Louise and Michael were aghast at such a future for their precious first-born. “We didn’t accept it. It’s a parental instinct to strive to give your child the best quality of life and we wanted to teach Georgia to be independent,” says Louise.
Over the next two-and-a-half years, the Conns dedicated their lives to ensuring that Georgia got the best care possible. But it wasn’t easy. Georgia’s poor motor skills meant she required round-the-clock attention. She was a hypersensitive baby who would be woken up by the slightest sound, even the flick of a switch. There were nights when Michael walked around their condo’s swimming pool for hours, trying to put a crying Georgia to sleep.
Louise’s own experience has been difficult too. She recalls Georgia’s 48-hour screaming jag. “She just wouldn’t stop screaming. We had to take turns taking care of her and try to sleep hiding under the pillows like this,” she says while cupping her ears. Louise quit her full-time designer job so she could take care of Georgia and bring her to her various therapy sessions.
Michael also gave up a lucrative job offer in Hong Kong when news of Georgia’s diagnosis broke. He then looked for another job that required less travelling.
But the Conns have no regrets, as they prefer to focus their time and energy on sifting through the many therapy options for their daughter. Thanks to their determination and tireless research, by the time she was two, little Georgia was already doing four to six hours of therapy a day, including physiotherapy, occupational therapy and massages.
The couple grabbed every chance they could to help their daughter – everything had a therapeutic objective. For instance, while relaxing with Georgia on the couch, Michael would massage her feet to keep them supple. By all accounts, Georgia was doing as well as was expected of a cerebral palsy patient in her condition.
But the Conns had a secret weapon. “We knew that Georgia’s cord blood was more precious than gold,” Louise says.
As information was scarce then, the couple bided their time, keeping abreast of the latest developments in the field of stem cells. When Duke University in the US recently powered a series of clinical trials transplanting stem cells into 97 cerebral palsy patients, the Conns started feeling more hopeful.
TEXT MADELINE LIN PHOTOGRAPHY WINSTON CHUANG ART DIRECTION SHERRY LEUNG HAIR & MAKEUP ZHANG YI
