Ethan’s steps

He­mo­phil­iac son a new nor­mal for Spa­niard’s Bay cou­ple

The Compass - - NEWS - BY AN­DREW ROBIN­SON edi­tor@CB­N­com­pass.ca

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.

Ker­ri­lyn Mercer

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.”

Guilt sub­sided

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.

Fam­ily fears

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.”

PHOTO BY AN­DREW ROBIN­SON/THE COMPASS

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.

PHOTO BY AN­DREW ROBIN­SON/THE COMPASS

Ker­ri­lynn Mercer holds her 10-month-old son Ethan in her lap at the dining room ta­ble of their home in Spa­niard’s Bay.

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