Social planned in Neepawa in support of Beckham Koscielny

Details

Published on Thursday, February 6, 2014

By: Kate Jackman-Atkinson

myWestman.ca

On April 11, 2013, Neepawa parents Bryce and Rochelle Koscielny knew something was wrong with their son Beckham. 

Beckham was less than two months old and was acting extremely fussy, sweaty and cold to the touch. His lips were blue. A trip to the doctor was followed by a trip to the Neepawa hospital and then a trip by STARS helicopter to the Children’s Hospital in Winnipeg.

At the Children’s Hospital, the diagnosis came: dilated cardiomyopathy.  Following a consultation with the intensivist and paediatric cardiologist, the Koscielnys were told that Beckham was very sick, but stable. They had to take things day by day.

Beckham spent a month in hospital.

A look back . . .

Beckham Coen Koscielny was born on February 27, 2013, following a short and uncomplicated birth. He was the Koscielny’s second child. Sister Olivia was three and half years old when Beckham was born. He was a healthy baby boy and the first few weeks flew by as Beckham grew and gained weight quickly.

Then came April 11.

It was initially thought that the disease was caused by a strain of the parainfluenza virus, which Beckham tested positive for in his initial hospital stay.  However, subsequent testing has led doctors to believe that he had always had dilated cardiomyopathy, but that the flu virus he picked up pushed his heart over the edge and exposed his heart condition.

After a month, Beckham was released from hospital and sent home with an array of medicines. He receives injected medicine three times a day.

Despite his weak heart, at eight months, Beckham appears to be a healthy baby boy.  He has met all of his milestones, such as sitting up, rolling over, crawling and pulling himself up to stand.

The Koscielnys were hopeful that Beckham’s heart might heal itself, but last November, his heart started to show further signs of weakness. He got sick following his flu shot and was admitted to hospital, the first time since he was released in May.  The doctors were concerned about the extent to which his heart had been compromised by an immunization and worried how he would cope if he were to actually be infected with a virus. 

What Beckham’s cardiologist said caught Bryce and Rochelle off guard and it was time to start investigating the option of a heart transplant for Beckham. 

The heart transplant team the Koscielnys were referred to work out of Stollery Children’s Hospital in Edmonton. On Jan. 12, the family headed to Edmonton for a week of consultations and to begin the process of getting Beckham listed. The week included blood tests, a couple of very long ultrasounds and echos as well as questions and assessments from doctors from almost every specialty.  For Bryce and

Rochelle, there was a lot of information about what the transplantation process would entail.

Following Beckham’s week in Edmonton, the transplant team and Beckham’s cardiologist in Winnipeg discussed the case and came up with an official decision. The Koscielnys left Edmonton knowing that they would have to wait at least a week to know the decision.

On Jan. 22, the transplant team leader called them to let them know that now is not the best time for Beckham to be listed for a heart transplant.  The majority of the team felt that he is doing well enough at home and want to wait and see. A transplant is not a cure, merely a treatment and it poses a number of serious risks and side effects.

This outcome didn’t surprise the Koscielnys. Based on Beckham’s current condition, it’s what they were expecting. Having undergone the assessment means that should Beckham’s condition change, which it is likely to do at some point, he can been listed quickly. He needs only updated blood work, which can be done in Winnipeg, before being placed on the transplant list.

“There are a lot of positives to Beckham keeping his heart for the time being, and really the only thing that worries and scares us is that we will likely have to watch him get worse before he gets better,” said Bryce.

What lies ahead . . .

Beckham’s condition has meant changes for the Koscielnys.  Because Beckham is less able to handle infections, doctors have cautioned against him attending daycare, where he will be exposed to more germs and viruses.

This means that as Rochelle’s maternity leave from her job as a nuclear medicine technologist came to an end, they would have to make a decision about who would be staying home to look after Beckham. 

Bryce, a teacher at NACI, has obtained a leave of absence for the spring semester and will be returning for the start of the 2014-2015 school year. This gives the family a plan for the next six months, which is about as far away as they can plan at this point in time.

The biggest impact Beckham’s heart has on his life is that he is susceptible to germs and illness.  It can take him three to four weeks to get over a cold or flu.  “A flu can be life threatening, and that’s the scary part for us,” said Bryce.

He explains that they have to make sure he lives in a very clean environment and he can’t be around sick people.  When they go out, they have to be very careful to make sure he doesn’t touch things or put them in his mouth. “The doctors said, ‘You have to live in a bubble, but you can’t live in fear’,” said Bryce.

“In his home environment, he’s very much normal,” said Bryce.

For now, Bryce says the future is uncertain.

 “There’s not much of a plan. We’re taking it one day at a time,” he said. A lot will depend on how Beckham’s health changes over time.  “He could get worse next week, next month or in two years.  It’s a waiting game,” continued Bryce.

From the outside, Beckham looks like any other baby his age and seems to be developing as he should. “Day to day, you would think he’s a normal, healthy kid,” said Bryce. He seems to get tired, but Bryce said it’s hard to know if that’s due to his heart or just his nature.

The impact his heart will have on his future is unknown at this point.  “As for what he’ll be able to do, he’ll dictate that on his own,” said Bryce. For example, he may be only able to ride a bike for 10 minutes before getting tired or he may not be able to ride a bike at all. “One kid [with Beckham’s condition] can do a lot, the next kid can’t. There are so many unknowns,” said Bryce.

To help the Koscielnys, friends and family have decided to host a benefit social on March 22 at the Yellowhead Centre in Neepawa. In addition to the social, a trust fund has been established at CIBC and people can also purchase a Get In The Loop membership in support of Beckham.

Get In The Loop is a mobile membership offering members categorized discounts from business partners in Western Canada and Westman businesses, including the Neepawa Golf and Country Club. Get In The Loop will be donating 50 per cent of the $29 memberships sold until March 31 to Beckham’s trust fund.

The money is being raised to help cover costs of medication as well as transportation and other costs that come from traveling back and forth to medical appointments.

“We appreciate what people are doing,” said Bryce.

The social

• Date: March 22

• Time: 9 p.m. to 1 a.m.

• Location: Yellowhead Hall in Neepawa, MB 

• Tickets can be purchased at Gill and Schmall Agencies, Harris Pharmacy and Venus Hair Salon

Links

• You can also follow the Koscielnys' journey at beckhamsjourney.wordpress.com

• To register for Get In The Loop and see which area businesses are participating, go to: 

www.getintheloop.ca/benefits/helpbeckham

In photo: Eleven-month-old Beckham Koscielny has dilated cardiomyopathy, which means his heart can’t pump blood with as much force as a healthy heart can.  A social is planned to help cover the cost of medication. He requires injected medicine three times a day,  as well as transportation costs to visit specialists.

Photo submitted

(Updated on Feb 7 to add information about the social and links)