At three months old, Baby Jagger Florence has survived one open-heart surgery and still faces two more operations to rebuild his heart.
Born with various organ malformations and no spleen to protect him from infections, tiny Jagger has been rushed to the hospital’s emergency room numerous times in the month that he’s lived at home with his young Red Deer parents.
But despite his serious health problems and need for tube feeding, Jagger mostly smiles and gurgles good naturedly.
He looks up at the faces he sees with interest.
His grandmother Debbie Florence considers Jagger to be an inspiration. “He’s such a happy little guy, for everything that he’s been through,” said Debbie.
“You gain strength when you see how he’s never complaining. It’s a blessing . . . You look at the little things in life differently. You think, if he can be happy, why can’t we be happy?”
The Florence family has had a lot to deal with since Jagger was born in an Edmonton hospital on Feb. 23 with what doctors considered a 10 per cent survival rate.
Those odds were bumped up when Jagger emerged stronger than was first anticipated when his condition was diagnosed in utero, said the baby’s 22-year-old father Tyler Florence.
Coming into the world with a congential disease called Total Anomalous Pulmonary Venus Connection means that Jagger’s organs are not in their proper spots.
His heart has fewer chambers than normal, his liver is enlarged, his lungs are malformed, and he will have to be on antibiotics for his whole life because he has no spleen.
But “he wasn’t that blue when he was born,” said Tyler — which meant that doctors were able to wait until Jagger was two weeks old before performing the first of three operations to reconfigure his heart.
The surgeons started moving veins and arteries around to find a way of separating his “red and blue blood” — or stop the mixing of oxygenated with non-oxygenated blood, said Jagger’s mother, 20-year-old Lauren Florence.
“It’s been very stressful,” added Lauren, who noted her baby, now weighing only 10 pounds, also had an unrelated stomach operation at five days old.
Jagger is due for another open-heart surgery next month and a third by the time he’s three or four years old.
“It’s very hard to see him go through so much at such a young age,” said Tyler, who is grateful for all the family and community support.
The young married couple and Jagger live with Tyler’s parents, Debbie and Geordie Florence out of necessity.
There always has to be two people around in case the baby’s breathing or feeding tubes come out. Debbie said it takes a couple of individuals to reinsert them.
“It’s a little bit stressful because it’s uncomfortable for him and he’s crying through it,” said Lauren.
Finances have also been tight. Tyler was forced to reduce his work hours at his retail job to help Lauren with Jagger, as has Debbie. “No one’s been working steadily because (the baby) is a lot of work,” said Tyler.
For a while, the family was making regular trips to the Stollery Children’s Hospital in Edmonton. Lately this has shifted to numerous visits to the Red Deer hospital emergency room as Jagger has battled one infection after another.
But friends and even strangers, who read about the baby’s condition on Facebook, have rallied around the family, sending donations towards their expenses, and forwarding words of encouragement.
“We never expected anything like this. People have been amazing,” said Tyler, who noted support has arrived from as far as Eastern Canada. A Red Deer photographer, who’s donating a portion of her fees for a month, are among the family’s local supporters.
“There’s nothing we could ever do to say ‘thank you’ enough for what everybody’s done. They are in our hearts and our thoughts,” said Tyler.
There are plans to start a trust fund for Baby Jagger’s ongoing expenses at a local bank. Until then, any donations, including formula and diapers, can be dropped off or mailed to 15 Erickson Dr., Red Deer, T4R 2A3.
lmichelin@www.reddeeradvocate.com