Kynley waits for a new heart, community rallies support

Six-year-old Kynley, daughter of Blair and Jody Kristinnson, is waiting for a new heart and as her community has become aware of it, several groups have pitched in to help lighten her family’s load.

Not only did her school recently hold an assembly along with fundraising, but the Virden Lions Club also rallied with financial support.

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“They’ve given us a wonderful donation,” said Jody about the Lions Club support. “We’re so thankful for the help.”

She added that although she didn’t grow up in the Virden community, “The support that we have had in the community is really second to none.”

Kynley was born with hyperplastic left heart syndrome (HLHS). This condition usually requires three reconstructive open heart surgeries, says her mum.

To date, Kynley has had four open heart operations in her six short years, plus many procedures.

Kristinnson said, “I don’t have a total number, but she’s definitely had over 20 surgeries… she’s had 10 heart catheterizations, where they go through her groin or her neck, down into her heart and her lungs.”

(Through catheterization doctors measure heart blood pressure and determine the heart’s condition.)

“Plus she’s had four major open heart surgeries where they’ve opened up her sternum to get into her heart.”

COMPLICATIONS DEVELOPED

“After Kynley’s second open heart surgery, things went south and they ended up doing CPR and putting her on life support,” says her mum. “Her pulmonary veins have narrowed so she can’t get blood from her left lung to her heart, so that’s what has caused the most grief.”

Using a catheter and stents, doctors have worked to open the veins that carry blood back to her lungs for oxygenation. However, the veins continued to narrow.

Kynley, considered to be in heart failure, was put on the list for a heart transplant on Oct. 16, 2017. That was two years and four months ago. Says Kristinnson, “It feels like forever.”

Meanwhile, oxygen levels in her blood were too low and a few weeks ago, in January 2020, Kynley was started on oxygen.

“That has proven to be a little bit difficult with the logistics,” says Kristinnson.

And, initially they were told that portable oxygen was not covered by Manitoba Health. However, after an appeal to their MLA and to Penny Gilson, CAO of Prairie Mountain Health, the machine that is critical to Kynley’s life now falls under PMH support.

In the meantime, Kynley’s many needs got the attention of the Lions Club.

Wayne Hutchison, Kynley’s bus driver had the little gal under his wing, so to speak. She sat at the front of the bus and out of concern for her, Hutchison contacted his friend, Lion Len Collier.

From there, the Lions decided to do what they could to help the Kristinnson family with medical expenses, donating $3,640.

The Kristinnson family of five, with sons Aiden, four, and eight-month-old Dawson, lead a stay-at-home life.

“It makes travelling quite limited. Blair and I can’t go anywhere….”

They are waiting for the call to say there is a heart available for Kynley. Edmonton is where the operation will take place.

“Manitoba Life Flights will fly to Virden and pick us up – Kynley, and either Blair or myself,” says Kristinnson.

Jody’s mother Pat and step-dad Bob moved to Virden from Hamiota in order to support Kynley and her family. Their help, particularly with the other children, has been a godsend says Kristinnson.

At six, Kynley is a buoyant, busy little girl who loves art and gymnastics. “She likes to do the balance beam and hang on the bars and try and do somersaults and bridges. Low key, at her own speed, she does quite well with it,” says Kristinnson.

“She knows she can’t keep up with the kids in her class, or her younger brother who is four.”

Her mum adds that Kynley is starting to understand her situation now. Although she knows she needs a new heart, her mum says, “To be honest she’s quite a happy little girl.

“She says her prayers every night and asks God to take care of her family and help the doctors to find her a new heart.”

 

 

 

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