‘The roller coaster of emotions is horrible’: Fundraiser planned for Kings County baby born with serious medical issue

Published on April 12, 2017

The family is doing their best to accommodate all of their daughter's needs, but are ultimately thankful for the help given to them by the community.

©Submitted

NEW MINAS, NS - When Katelyn Swain went into her first ultrasound, she had no idea she was carrying twins.

After having her daughter Jac-lynn two years ago, she wanted to wait for more children -- that didn’t go as planned, either. But, when Swain went into her 12-week ultrasound, doctors unfortunately found another major surprise – one of her babies had a serious medical condition.

“I don’t wish this on anybody,” says Swain. “It’s horrible to go through. The roller coaster of emotions is horrible.”

She prematurely gave birth to two girls on Dec.12: Jayelyn and Jayme-lynn.

Jayme-lynn was born with Cloaca, a rare disease that fuses or blocks the anus, bladder and vaginal cavities. Jayme-lynn has no rectum, and her bladder back tracks into her vagina, making her at high risk for infections.

“Your body needs to be able to release (waste). If you don’t release them,” says Swain, “It can kill you.”

After being born, Jayme-lynn stayed in the IWK and underwent five surgeries. She was sent home over a month later with an ostomy, vaginostomy and vesicostomy (a tube in her stomach that drains her bladder).

 

Financial cost to caring for sick child

Three-month-old Jayme-lynn was born without a rectum or vagina, a defect known as Cloaca.
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Swain says having a sick child comes with many difficulties. Beyond the emotional distress, there comes a physical and financial toll. The cost of travelling to and from the IWK several times a month, childcare for their two-year-old, ostomy supplies, and a high calorie baby formula have weighed the family down. Swain’s fiance, Mark Beaton, missed over a month at work. In a Facebook post, Swain says the bills are piling up.

“It’s a burden,” she says. “It is, I won’t lie, but it’s got to be done.”

Hearing about the family's struggles, community members have offered to help. Jodi Bishop, along with Sherri Kane, Andrea Sherman and others, has organized a fundraiser. On April 21 at Dooly’s in New Minas, everyone is invited to help Jayme-lynn and her family.

“It’s upsetting to know their three-month-old is going through this,” says Bishop.

The event -- running from 7 p.m. to 10 p.m. -- will include a ticket auction, 50/50 draw, a bake sale, and local vendors. There is no cover charge, and attendees can donate what they like. Vendors will also be making donations and contributing prizes.

Although not very close to the family, Bishop felt compelled to help after a fundraiser at the Waterville & District Fire Department only collected $160 for Jayme-lynn.

“I just wish there were more resources for sick kids,” says Bishop.

And Swain has to agree. She says one of the hardest parts about Cloaca is the lack of resources and information. There currently isn’t a specialist in Nova Scotia for Cloaca. Swain says the fundraiser “gives (her) hope.”

“I have people I can rely on to help in difficult situations,” says Swain. “I’m not one to usually ask for help, and for them to create a fundraiser out of the goodness of their own hearts really means a lot.”

 

More surgeries ahead

The next step for Jayme-lynn is more surgeries. Doctors hope to surgically create an anus and vagina for her by the end of summer, followed by eight to 10 weeks of healing and a closure of her ostomies. Swain says she isn’t looking forward to the surgeries.

“It’s terrifying what you see on the Internet,” she says. “It’s even more terrifying going into something you don’t know anything about.”

But for now, the family tries to stay positive. The babies have begun to smile, and their older daughter Jac-lynn has taken a fondness to her twin sisters.

“She absolutely loves Jayme, that’s her baby,” she says. “She calls Jayme ‘Jayme,’ and Jayelyn she can’t say, so she calls her ‘Jimmy’.”

Swain says spending time with her daughters is what makes her the happiest.

Go online: For more information on the Dooly’s fundraiser for Jayme-lyn, visit: https://www.facebook.com/events/1147335325392086/.