Parents applaud government’s decision to implement newborn screening
For Jeff and Jennifer Hancock of Shoal Harbour, the provincial budget for 2014/15 filled in a missing link in health care for the province.
© Packet file photo
Jeff and Jennifer Hancock have two songs with cystic fibrosis, Riley (left) and James (right). They applaud the government’s decision to start cystic fibrosis screening.
The province has decided to spend $158,800 on a cystic fibrosis screening program.
As of last year, Newfoundland along the rest of Atlantic Canada and Quebec did not do newborn screenings; all other provinces along with the 50 U.S. states did testing. Nova Scotia is implementing the program this spring and P.E.I. and New Brunswick have indicated they may soon follow.
The Hancocks are one of 70 families in Newfoundland with a child with CF, and one of six in the Clarenville area.
Their son, James, was nearly three years old when he was diagnosed with CF, a disease which causes mucus build up in the lungs and clogs the pancreas, preventing proper digestion of food.
James had persisting health issues for over a year before it was confirmed he had the disease; his parents noticed an immediate improvement after he was prescribed enzymes.
The Hancocks feel they could have been saved a lot of hardships had a screening been done at birth.
They say that early diagnosis of cystic fibrosis allows for immediate treatment and can improve height, weight and cognitive function. If the disease goes untreated it may cause irreversible damage to the lungs and digestive system.
Jennifer Hancock says the announcement came as a bit of a surprise.
“I was a little shocked, I wasn’t expecting for it to be this quick, some were advocating newborn screening but there was no real movement. They had talked about waiting to see what Nova Scotia would do,” she says.
She says the announcement should also help inform the public about CF.
“That’s another thing about the screening is that people are becoming aware. Before, when babies were born they did the heel test, so every mother was aware of PKU, but nobody knew about CF. Now because of the newborn screening, everyone is going to be aware of it. It’s a big deal,” she says.
Jeff Hancock says he hopes the decision will help save parents the stress of what they went through with their ordeal.
“I remember a time James had pain in his stomach for 36 hours straight, a diagnoses would have prevented that. It’s not going to change the fact that the child will have CF. But they will get an earlier start on healthier living and treatments,” he says.
The Hancocks have a second child, Riley, was screened at birth and diagnosed with CF. They consider themselves a perfect example of the benefits of an early diagnosis.
“We had one child who was diagnosed late and one that was screened at birth. It makes a huge difference,” says Jennifer, adding, “Riley is a totally different child. James didn’t grow for a year and half and Riley is steadily growing. Riley has been doing physio since he was born, James lost three years of physio and the meds. It makes a big difference,” she says.
The Hancocks also give their gratitude to John Bennett who they say was relentless in his campaign to bring the screening to the island.
Bennett also has a son diagnosed with the genetic disease. His exposure to the complications caused by CF led to him becoming the regional director of Cystic Fibrosis Canada’s Newfoundland chapter.
Bennett told The Packet that funding announced in the province’s budget this year brought about a lot of emotions and was the culmination of a lot of work by CF families on a national and local level and opposition MHAs such as Andrew Parsons.
“We worked really hard on this for the last year and the lobbying efforts started back in July of 2012. It was fulfilling to see the advocacy pay off. I thought of my own struggles and our families struggles. I thought of the Hancocks and how long they had to wait to find out their boy had CF, and I also thought about the families who we are going to help once the newborn screening program gets implemented,” says Bennett.
Bennett expects the program will be in place in a year, based on the time Nova Scotia needed to get its system in place.
“Nova Scotia announced theirs in the budget in April of 2013 and it (program) started April 1, 2014. There’s certainly a lot of details to work out,” he says, adding, “those details will be worked out with the department of health and of course the other health boards and it will run through the Janeway. I would like to hope it doesn’t take more than a year. ”
Bennett says he’s grateful to all those who lobbied for this service.
“It just goes to prove that advocacy and lobbying does pay off at certain times for those who are persistent and this is for a great cause.”