Manitoba baby girl with rare neck growth gets help from around the world
A baby with a rare medical condition has forced Winnipeg doctors to look around the world for treatments
It was Christmas Eve and Melanie Finnimore knew something was wrong with her baby after seeing her doctor in Portage la Prairie, Man. for an ultrasound 24 weeks into her pregnancy. Within 24 hours, she was scheduled to have a fetal assessment done at the Health Sciences Centre in Winnipeg.
"I was told there was a large mass, a cyst. They thought it was the front of her neck. They weren't quite sure how large it was or what it was going to do," Finnimore told CBC News.
An action plan for her delivery was set in motion. It would be a scheduled C-section with about 17 people in the delivery room.
"Certain teams had to be in place because of the complexity of her airway. We weren't sure how complex it was going to be. At birth, I did hear her cry for about a minute, while they quickly whisked her away to stabilize her airway with a ventilator," Finnimore said.
Joy Finnimore was born on April 7 with a birth defect known as a cystic hygroma. It is an abnormal growth or congenital malformation of the lymphatic system that generally occurs in the neck, according to Dr. Melanie Morris, Joy's pediatric surgeon.
Occurrences of a cystic hygroma are extremely rare, Morris said, roughly one in 5,000 babies will be born with the condition.
Morris and other Winnipeg specialists have reached out to contacts around the world gathering expertise. A treatment used by physicians in Japan was replicated and used on Joy in hopes of reducing the mass around her neck.
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"There is a specific substance in Japan that we used to help the lesions. We had to apply for special permission to get it," said Morris.
The outcome wasn't a success but Finnimore isn't discouraged by the setback.
"With Joy's entourage of surgeons thinking outside of the box and gathering information, they will go from there. There are options out there. We have to find what works for her," Finnimore said.
Joy has been surrounded by that entourage since her birth, she has never left the hospital.
"Because of how critical her airway is, we can't take her off the grounds or out of the hospital," Finnimore said.
Joy's condition has meant that Finnimore had to relocate from Portage la Prairie to live at Ronald McDonald House in Winnipeg, meanwhile her husband is commuting. Both parents are being trained by medical staff at the Health Sciences Centre on how to handle critical situations and provide around-the-clock care to their daughter.
An uncertain future
"I was never a big fan of hospitals. I am quite, I would say, phobic of hospitals. But the power of love, it doesn't matter. You can put things to the side. Once she gives you a smile, it's all worth it and you forget about everything," Finnimore said.
"A typical day starts off with changing diapers, suctioning, Joy requires a [gastrostomy tube] for feeding. I still feed her breast milk. Then by the time I am done that, more suctioning. Then more training from nurses and specialists."
Appointments with the physiotherapist, story time, and other activities also fill up Joy's day.
Doctors don't know if Joy will ever be able to live without her tracheostomy, to help her breathe, or her gastrostomy tube, to help her eat.
"Her prognosis is good in the sense she will develop. Her capacity to speak, eat and breathe without tubes is guarded at this time. She has limitations that may be there for a long time. That is something I won't be able to know until we know about different types of treatment. In terms of her functioning independently outside of the hospital, I am very optimistic," Morris said.
But Joy's discharge could still be another year away.
Finnimore doesn't want to think about all the costs for medical equipment and supplies that will be needed when Joy comes home. Instead, she tries to keep things in perspective.
"She brought me so much joy as soon as I found out I was pregnant. She is really a joy. She is living up to her name as well. I do say the Joy of the Lord is my strength," Finnimore said.
The Finnimore family has nothing but words of praise for the staff at Winnipeg's Children's Hospital, and they are overwhelmed with the support from the people back home in Portage la Prairie.
Two girls from the family's church set up a lemonade and cookie stand that raised $1,400. A seniors centre gave them a cheque for $500, and the local fire department has also made a donation.
Finnimore has set up a trust fund for Joy at the Austin Credit Union in Portage la Prairie and a GoFundMe page has been set up for the family.