The smiles worn by Caroline and Derek Robertson are beaming brighter than the sunbeams pouring into the kitchen of their Yarmouth home. Baby Millie is home in her nursery after a tumultuous five months that included several heart operations. Her first one was performed while she was tucked safely inside her mother’s uterus last November.
Millie has a congenital heart defect called hypoplastic left heart syndrome. The rare birth defect affects normal blood flow through the heart.
After Millie’s birth on Dec. 23, she was transferred to the Toronto Hospital for Sick Children for another operation immediately.
She had outgrown the stent they put in her heart while she was in utero at 32 weeks and her blood wasn't flowing to her brain and lungs.
As of early January, she was doing well but then the Robertsons received a devastating medical update.
Millie was diagnosed with a second congenital heart disease called pulmonary vein stenosis. There is no cure for this disease and very little is known about it.
The Robertsons established a bucket list for their five-week-old daughter that included meeting a dog (she met therapy dog Moxie in Toronto), going outside, watching Shrek and having a sleepover with her parents in the hospital. The biggest goal was for Millie to see her home and to sleep in her nursery, even if it was for a very short time.
Caroline said at the time: "We want her to feel what it's like to be in her own space, surrounded by her things and all the love we poured into the room.”
Millie had the “Coles procedure” about six weeks ago (sutureless pulmonary vein repair) and is now on a trial drug.
“We are just waiting to see that her veins don’t narrow any further. If they don’t she would need another surgery at six months and another one when she is three years old,” said Caroline.
The family flew back to Nova Scotia in mid-March when Millie was transferred to the IWK Health Centre in Halifax.
And now, Millie is home in Yarmouth where her parents are carefully nurturing her growth.
Her weight is checked every morning to detect any build-up of fluid around her heart.
“We’d see a very large weight gain in a very short period of time,” said Derek. They also have a saturation monitor to tell how much oxygen is in Millie’s blood.
“That number would go down if she wasn’t having good blood flow,” said Derek.
The family is being followed very closely by a palliative care team at the IWK and in Toronto.
“We’re trying, with what life she has, to make it very good and to enjoy it. We don’t want the fact that things could go very badly, very quickly, to affect how she lives day to day,” said Caroline.
“Right now she’s just getting to be a baby and that’s awesome. Sleeping on her mom’s shoulder. This is so nice.”
At one point their daughter had a PICC line (peripherally inserted central catheter), wires, tubes and monitors surrounding her.
“With this drug trial and surgery there’s a chance that Millie could grow up. It’s a very small chance, but there’s a chance there and that’s what we can focus on,” said Caroline.
The couple says they appreciate the support and love from the community.
“It feels so good to know so many people love our baby. I really believe in positive energy and thoughts and that there might be some healing power in that. If that’s the case then Millie has got the best chance in the world because there are so many people that seem to be completely in love with her,” Caroline said.
They’re excited about going to her mother’s for Easter.
“Millie has three Easter dresses. We’re going to go to church and she’s going to get spoiled by all the family.”
How you can help
Both Caroline and Derek Robertson are on leave from their jobs, which impacts their income and expenses. Caroline works as town planner for Yarmouth. Derek has a job with Tri-Star Industries as a graphic designer. A GoFundMe campaign for the family has raised $8,600 and is still accepting donations.
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