Little Beckham Koscielny’s ailing heart isn’t as strong as it should be, but it still generates a lot of love.
Fellow Neepawa residents have proven eager to help the critically ill 11-month-old boy and his family.
"It’s absolutely amazing," says Beckham’s mom, Rochelle. "That’s kind of part of the charm of a small town. Everybody, they’re there for you in one way or another."
Beckham has a heart condition that prevents it from pumping properly, and it’s expected he’ll need a heart transplant some day.
Rochelle and Beckham’s father, Bryce, have shared their boy’s story in a blog. In it, they describe the frightening moments in which they realized their boy was ill.
Beckham was born in February 2013 and was doing well with no sign that anything was wrong. Then, at six weeks old, everything suddenly changed.
At first, his parents thought their little boy was getting a cold because his older sister had one.
But on the morning of April 11, it was clear that something was seriously wrong. Beckham was sweaty and cold to the touch and had let out a "disturbing" cry.
Rochelle called the doctor and Beckham was in the physician’s office within 20 minutes. By that time, his lips had turned blue.
The boy was taken to Neepawa hospital, a tube was inserted into his windpipe to help him breathe and he was flown by STARS air ambulance to the Children’s Hospital in Winnipeg, where he was placed in the intensive care unit.
As a nuclear medicine technologist, Rochelle sees such scenes each day and was initially focused on getting her son the care he needed. But, unable to travel with her son on STARS, it was while she said goodbye and during the long drive to Winnipeg that things sank in.
"He’s going to be OK, he’s going to be OK," she thought to herself.
"It’s surreal, you don’t ever think this is going to happen to your kid," Rochelle said in an interview this week.
Thanks to the quick action of his mom, his family physician and medical staff, Beckham survived this scare.
He stabilized during his stay in hospital and after a month was able to go home with medications, although he would have to make weekly trips to Winnipeg to adjust his medication.
A second scare came in November after Beckham had his flu shot.
While it can’t be said the shot itself was a problem, Beckham’s body reacted to it with heart failure and he was hospitalized for four days.
It was decided to see if Beckham was a heart transplant candidate and, in January, he was sent for assessment at the Stollery Children’s Hospital in Edmonton.
After a series of tests and consultations, medical experts concluded that Beckham was born with a heart condition called dilated cardiomyopathy. He has a weakened and enlarged heart that can’t pump blood properly.
The scare that originally sent him to hospital in April was caused by a flu virus that had pushed his heart and exposed his condition.
There’s no cure for dilated cardiomyopathy.
Rochelle said statistics show that, within two years, 50 per cent of children with the condition either have a heart transplant or die. The remainder are able to live with a decreased heart function.
Beckham’s heart is working at about 20 per cent of a regular heart. For now, his body is able to cope and it’s a matter of waiting to see how long that remains the case.
The cardiology team at Stollery has decided Beckham is doing well enough that it’s not the time for him to go on the list for a heart transplant, although it’s expected that time will come.
Meanwhile, the more he grows, the stronger he’ll be for a heart transplant if that time comes. Without a transplant there’s the risk of death; while a transplant may bring its own complications, it comes with a good chance of a long life.
With medications to help his heart, for now it’s hoped that Beckham will grow and develop without further complications. His family tries to enjoy life day by day and Beckham seems to be like any other boy.
"He’s walking along furniture now, he’s trying to do all those little things that almost-one-year- olds should do," Rochelle said. "He’s just a super happy baby. This hasn’t fazed him one bit."
Life has changed dramatically for the Koscielnys, however.
The family has to be careful to prevent Beckham from falling ill, which would strain his heart. When his parents and sister come home they change their clothes and wash their hands, for example.
The family also avoids meeting with friends and relatives who have recently been sick, and Beckham doesn’t go to daycare due to the increased risk he’ll be exposed to germs and illness.
Bryce has taken a leave of absence from his job as a teacher to stay at home and care for Beckham and his four-year-old sister Olivia, while Rochelle has returned to work following her maternity leave.
Besides the emotional ordeal, Beckham’s family has been impacted financially too.
The family continues to travel to Winnipeg for medical appointments, and there’s the cost of travel and medication.
When it comes time for a transplant, the procedure will be performed in Edmonton and the family will have to stay there for up to three months.
To prepare, they’ve moved to a smaller home and are working to save money.
Medication will remain an expense after the procedure. One drug, which Beckham will have to take for a few months, will cost $1,500 per month.
Neepawa citizens, friends and neighbours have been enthusiastic to help.
They’ve donated money outright, and one neighbour made Christmas ornaments and sold them to raise funds.
Local businesses have donated raffle prizes for a benefit social being held for Beckham and his family.
Get in the Loop — a business that provides discounts for local businesses and donates part of the cost of membership to good causes — has also stepped up to help Beckham. New members can opt to have half of the membership fee go to the boy.
All of the money raised goes to a trust fund set up in Beckham’s name.
In the meantime, the family cherishes its time with him.
"We’re just enjoying him as much as we can at the moment… We don’t take things for granted," Rochelle said.
Beckham’s ongoing story can be followed online at beckhamsjourney.wordpress. com.
» Twitter: @IanHitchen