Baby Henry’s Battle

These days, the Brown family lives its life road-ready.

A quick run into Kamloops from their home in Pinantan Lake, or even a phone call, can have the

11-member family loading up the cargo van, preparing to head up the Coquihalla with no notice.

The trips to Vancouver can last a few days or balloon into stays of nearly a month.

“The last time we went, we didn’t bring anything,” says Miranda Brown. “We were only supposed
to be there for a checkup and then got admitted. That’s one of the unexpected things.

“It was supposed to be a two-hour visit and we were there for two days.”

It’s been this way since November, when the small boy with the head of floppy brown hair sitting in her lap first arrived, along with his twin brother Seamus.

Right from the beginning, baby Henry has made his family’s lives more interesting.

While having twins was new, Miranda and husband Chris were old hands at childbirth.

The births of their first seven children, from 14-year-old Austin to two-year-old Hannah, had all gone smoothly.

So, too, had the 39 weeks of pregnancy leading up to Nov. 12, 2013.

Over the course of 10 ultrasounds, Miranda was reassured Henry and Seamus were developing just fine.

“I distinctly remember them saying, ‘Oh look — four chamber hearts. Beautiful little hearts,’” she recalls.

When a pediatrician checked the babies not long after they were born at Royal Inland Hospital and reported Henry had a heart murmur, Miranda didn’t worry.

“I thought, no big deal,” she says. “Babies have heart murmurs.”

An hour later, the doctor came back to tell Miranda she would be making the first of many trips to Vancouver.

Henry needed open-heart surgery at the B.C. Children’s Hospital and they would be flying out as soon as possible.

By the time Miranda heard the news, Chris was already on the road back to Pinantan to pick up the rest of the family and introduce them to their new brothers.

That quickly turned into a trip to grandma’s in Kamloops, where the kids would spend the next three weeks.

At the hospital, Miranda was reeling from the turn of events.

“I just lost it,” she says.

“I had no idea anything was wrong and it just kept getting progressively worse as the night went on.”

Eventually, Henry was diagnosed with a rare heart defect.

While most people have four chambers in their hearts, he has three.

Henry was also missing the pulmonary artery that would normally feed blood to the lungs, allowing oxygen to circulate through his bloodstream.

On Nov. 18, Henry had what will be the first of many surgeries — a procedure to install a shunt to keep his heart and lungs connected.

Between the ages of six and nine months, he will undergo more open-heart surgery when doctors at B.C. Children’s Hospital will essentially rebuild his heart with a donor artery.

The process will have to be repeated throughout his childhood because the donor artery won’t grow along with him.

Doctors will also need to fix Henry’s diaphragm, which was nicked during his first surgery and is paralyzed as a result.

A few days before meeting KTW, doctors from B.C. Children’s Hospital were in Kamloops for one of three annual cardiac clinics they stage in the city.

Henry was among the heart patients to visit and doctors almost sent the baby to the Vancouver hospital due to problems with his diaphragm.

At home in Pinantan Lake, Henry’s heart condition means a few changes to daily routine.

Miranda monitors his oxygen level a few times a day and reports the numbers twice a week to a nurse who calls from B.C. Children’s Hospital.

Because Henry is taking aspirin daily to keep blood from clotting in the shunt between his heart and lungs, his immune system isn’t as strong as an average baby’s.

That means no interacting with the public during cold and flu season.

It’s not the only reason Miranda is glad she chose to homeschool her children — but, lately, it’s a big one.

“A cold or a flu is really dangerous for him,” she explains. “It would put him in the hospital.”

Homeschooling is also coming in handy as the family prepares for long stretches of time away from home.

For the first three weeks of their lives, Henry and Seamus didn’t get to meet their seven siblings.

Planned visits in Vancouver had to be cancelled as the Coquihalla Highway was closed due to bad weather.

“It was so hard to phone home,” Miranda says, “because they’re crying and I’m crying because they’re crying.”

The separation could have lasted longer. Henry could have taken longer to recover. But, Miranda notes, even a quick recovery, under the circumstances, was too long.

Now, when Henry goes to Vancouver, the family goes with him.

“It’s really important to me and my husband that we do this as a family and we don’t just single out the one,” Miranda says. “because it’s going to be such a long road, we want to make sure everyone sticks together.”

That means more than just road trips.

At home, studying the heart has crept its way into the Brown family’s homeschool curriculum.

To learn about anatomy, the kids constructed a model of a heart out of graham crackers and marshmallows.

“We decided we’re all going to become heart experts and really learn this,” Miranda says.

The kids have also found their own ways to rally around their         little brother.

Sitting in the dining room is a big glass jar with a sign stuck to the front: “Help buy Henry a heart.”

Some of the bills sitting inside come from the elder siblings’ babysitting jobs.

“We’re like, ‘You don’t have to do that. That’s not your responsibility,’” Miranda says.

“But, they keep putting money in there.”

Fourteen-year-old Austin, the oldest of Henry’s brothers, pipes up. “We say, ‘If you tell us no, we’ll put more money in.’”

A few hours after the Browns sat down with KTW, Henry was admitted to Royal Inland Hospital once again. He and his family spent another week in Vancouver and are due to return to Kamloops today (Jan. 31).