She’s just turning one, but Baby Millie has already taught many about the power of hope and prayers. A legion of supporters has been cheering her determination to survive since her first operation for a congenital heart defect was performed in Toronto while she was tucked safely inside her mother’s uterus.
Immediately after her birth, Millie was whisked to the Toronto Hospital for Sick Children for another surgery. She had outgrown the stent they’d put in her heart while in utero at 32 weeks, and blood wasn’t flowing properly to her brain and lungs.
In January Millie was diagnosed with a second congenital heart disease called pulmonary vein stenosis, and parents Derek and Caroline Robertson of Yarmouth established a bucket list for their baby.
The couple decided to openly share Millie’s many challenges and achievements. Because of their baby’s numerous surgeries in Toronto, many family members didn’t have a chance to meet her, nor spend time with her in the beginning.
“If she never got to meet the people that loved her, I wanted them to feel like they knew her,” Caroline said.
“I wanted her to be loved by everyone. So I began sharing more and more of Millie on social media. I wanted to have memories for myself but also for her, when and if she grows up, to look back on and see how many people love and support her.”
The family enjoyed some time back in Yarmouth for a few months but another operation was required in late July.
A Norwood procedure, a threestage heart surgery, was performed to create a new functional systemic circuit.
In October, doctors discovered Millie’s left pulmonary artery was very small and stenosed. It was ballooned open and two stents were placed inside. Millie spent
time in cardiac critical care but recovered quickly enough to return to Yarmouth before month’s end.
Since then, the family has celebrated many happy moments: Millie stood on her own, sprouted lots of new teeth, said “Dada” for the first time, played with her puppy and enjoyed dozens of other joyful experiences. She loves trying out new foods, singing, dancing and bath time.
Caroline has returned to work in an 80 per cent capacity as the town planner for Yarmouth and Derek is finishing off parental leave while working one day a week with Tri-Star as a graphic designer.
“We are hoping he can transition back to work in the new year after Millie has had her next surgery and is more stable,” Caroline said.
They’ve also found someone to help with child care.
Millie and her parents will fly back to Toronto on New Year’s Day. On Jan. 5, she is scheduledfor a pre-Glenn exploratory catheter to check the pressure in her lungs. If the pressure is in the right range and if her left pulmonary artery looks good, she’ll have her fifth open-heart surgery the following week.
The Glenn is the second of three surgeries Millie requires for her hypoplastic left heart syndrome. Afterwards, if everything remains good, she’ll go through the same process for the final surgery in a few years.
“From there, Millie could remain well and live for many years,” said Caroline.
“Some people with this diagnosis are still living with this palliative ‘fix’ in their 40s. Eventually, Millie will require a heart transplant. But this could be a long time from now and who knows what medical options will be available then?”
Right now, doctors are very hopeful with Millie’s pulmonary vein stenosis diagnosis, the disease that resulted in the family being recommended for a heart and lung transplant last February.
“It’s a miracle,” Caroline said. “We were sent home to wait for Millie to die and she provedeveryone wrong.”
Millie is still on the trial drug her parents opted for and she has not required any further surgical intervention since she had the sutureless Coles procedure.
“We’re still scared and the stenosis could come back any time, but the longer we go without seeing it reoccurring, the less likely it is to happen,” Caroline said.
“Millie is such a gift and our family is so happy. We are incredibly thankful for the time we get to spend with her and we cherish every moment.”