Although their home is in Yarmouth, where their infant's lovingly prepared nursery awaits, the Robertson family has been living in Toronto, spending their days at the Hospital for Sick Children since early December.
Baby Millie had her first heart surgery, to address a congenital heart defect, one month before she was born. Directly after birth she was whisked away for another operation. 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.
After the surgery her chest was left open several days to allow for swelling. It was a happy moment for Caroline and Derek when they finally were allowed to hold their daughter after the incision was closed and the breathing tubes and chest tubes removed. More surgeries would be required.
As of early January, Millie 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 doctor explained that the veins from Millie's heart to her lungs would start to restrict until eventually they disappeared and the blood flow would stop. The diagnosis disqualifies her from planned heart surgeries. To survive them, the child has to have good lung function.
"We were told at the time that they were going to recommend Millie for a heart and lung transplant," said Caroline. "That this would give her some time with us and a good quality of life during that time."
HEART AND LUNG TRANSPLANT
It would be the first infant heart and lung transplant to be completed in Canada and there are many complications they need to consider before putting her on the transplant list.
They would need to relocate to Toronto and it can take up to 18 months to receive organs. Millie may not have the time it would take to find her organs and she could die in the Cardiac Critical Care Unit. Once she gets her organs she would face many new challenges, including possible rejection. Once she recovered, the whole family could go home. Although she would require follow-up appointments at the Toronto Hospital for Sick Children, she could go to daycare and play with other kids.
"The only catch is that lung transplants always reject eventually, usually within three to five years. So Millie would not have a full life," says Caroline.
MILLIE’S BUCKET LIST
Doctors also began discussing palliative care options for Millie. She is being treated with prostaglandins that keeps a duct open in her heart and allows her to live. Her mother says because of the medical treatment she is receiving, she has to stay in critical care. Without such treatment she would have days to live. Palliative care staff asked Caroline and Derek to make some goals for Millie's life, things they wanted to achieve. This would help staff make a plan for her, to do whatever they could to give her the experiences her parents want for her.
"So we have been addressing Millie's bucket list," said Caroline.
She's been able to breast feed her baby, even though infants with heart defects often breathe quickly and are not able to breast feed. "It's amazing," said Caroline of the experience.
She wanted Millie to meet a dog before she dies. "Dogs have brought so much joy to my life and I wanted her to feel that," she said.
Millie is now visited weekly by Moxie, a Portuguese water dog. Moxie brings great happiness and a sense of relief when she comes to the family.
Derek wanted Millie to see outside so the team arranged for the family to go for a short walk to a window and look out on Toronto.
The team also arranged for Millie to have a sleepover in the hospital with her parents over the weekend. They'd never spent the night with their baby in a bed and had never held her lying down.
"I also want her to watch the movie Shrek with me. In the mornings I tell her stories about the adventures of Shrek and donkey. I promised her we would watch the movie together some day," says Caroline.
Right now, their biggest goal is for Millie to see her home and to sleep in her nursery, even if it's for a very short 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. The doctors know this and have promised that no matter what the future may bring and how Millie's condition progresses they will do everything they can to make sure she gets to her nursery in Yarmouth before she passes," says Caroline.
"Right now we are just living every day for Millie. That's all we can do. We love her so much and are treasuring every moment we have with our little miracle,” says her mom. “We have good days and bad days but Millie makes it all worth it. Being a parent is the most amazing feeling. We feel very lucky to be Millie's mom and dad."
How you can help
Feb. 7–14 is Congenital Heart Defect Awareness Week and Caroline and Derek are recommending two actions that can help many.
Give blood. Baby Millie has had to have three blood transfusions in her short sixweeks of life. It's a relatively easy thing to do that can make a huge difference for someone who is sick like Millie.
Consider organ donation. Millie shares a room with two other babies, a girl, three months, and a boy, five months, both waiting for new hearts.
"Its a horrible thing to talk about, but in the event of a tragedy, some good could come from it by giving another person the chance for life. I know what receiving organs would mean to us and the other parents who are waiting," said Caroline.
Caroline and Derek are residing in the Ronald MacDonald House in Toronto until doctors approve their return home. Both 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 is still accepting donations.