Hemophiliac son a new normal for Spaniard’s Bay couple
When Kerrilynn Mercer realized her newborn son’s health was in doubt, she instantly felt a sense of guilt.
One of his ears had folded down with bruising in that same area, and there was some swelling around his head. Staff at the hospital were worried bleeding in his body would damage his brain and vital organs. It was suspected her son, Ethan, had hemophilia.
Hemophilia is a rare bleeding disorder where blood does not clot as it normally would. Hemophiliacs can bruise easily, and its severity varies. An estimated 3,100 people in Canada are diagnosed with either hemophilia A or B.
Kerrilynn and her husband, Peter Mercer, were more than
He doesn’t bruise as easily now, and I even find that because of that, we’re not as cautious and a little more comfortable letting him explore.
comfortable with the prospect of dealing with Ethan’s condition if he could make it out of the hospital an otherwise healthy boy. In the end, he did. Now his mom is writing about her experience raising a baby with hemophilia in an online blog called “Ethan’s Steps: A Walk with Hemophilia.” What started out as a project for Kerrilynn’s Master of Education studies has since become a therapeutic activity for its author. It has also attracted a lot of positive feedback.
Kerrilynn knew based on her family history there was a possibility her child would be born with hemophilia, but in talking with Peter, they both decided it was best to avoid the added stress of genetic testing.
“We figured it didn’t really matter either way,” Kerrilynn told The Compass during Hemophilia Awareness Month at her home in Spaniard’s Bay, with Ethan firmly planted in her lap. “We just knew we wanted to have kids.”
When Ethan’s health first deteriorated, Kerrilynn felt guilty about not getting tested. However, a hematologist she spoke with instantly reassured both parents that they did nothing wrong.
“We said that it would have caused extra stress on us and during the pregnancy and delivery. It was unfortunate the way things happen, but thankfully everything turned out OK.”
Once a pediatrician at Carbonear General Hospital realized something wasn’t right, Ethan was transferred to the Janeway Children’s Hospital in St. John’s. There were some scares along the way, and it took two weeks to confirm Ethan did in fact have hemophilia. Fortunately, all ultrasound, MRI and CT scan results came back normal.
Today, Ethan is a healthy and happy 10-month-old boy who does the same sort of things anyone his age would. He loves to play with the phone and TV remote, shout with glee, snack on Cheerios, crawl around and use furniture to hold himself up and test the strength of his legs.
“He’s getting a bit brave,” said his mom.
There was a time when such bravery would have caused his parents to worry considerably. As a hemophiliac, Ethan’s is more apt to bruise easily. Of course, falling down and dealing with some bumps and bruises is a normal part of any child’s development.
He’s now equipped with an implantable port device in chest, which allows his parents to administer treatments to him at home three times a week. That usually happens right after he gets up in the morning, and the process from preparation to administering his treatments takes about 20 minutes. Ethan needs to be still for five of those minutes while his parents use the port, so Kerrilynn and Peter both have a role to play — not unlike those times when Ethan gets a little too wiggly during a diaper change.
“We’ve only been doing this treatment at home for a couple of weeks now … Beforehand we found his knees used to bruise easily from crawling, and he’d have bruises on his ribs just from picking him up. He doesn’t bruise as easily now, and I even find that because of that, we’re not as cautious and a little more comfortable letting him explore. And he’s so busy, because he’s non-stop. It’s hard to restrict him.”
Kerrilynn and Peter were recently invited to attend the Canadian Hemophilia Society’s three-day conference in Halifax this May to share their story. The opportunity came about through Kerrilynn’s blog.
“That will be our first time leaving him at home,” she said, noting they’ll be able to administer Ethan’s treatment in the morning before their flight leaves. “He’ll be OK, and especially where he’s on his treatment, it will probably make the grandparents feel a little bit more comfortable taking care of him.”
The Mercer family in Spaniard’s Bay isn’t fazed at all when it comes to dealing with baby boy Ethan’s hemophilia. His parents are Kerrilynn Mercer, originally from Upper Island Cove, and Peter Mercer, who hails from Tilton.
Kerrilynn Mercer holds her 10-month-old son Ethan in her lap at the dining room table of their home in Spaniard’s Bay.