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When Nicole Rogerson picked up the phone late one Tuesday evening in late January, she didn't know this would be the call that would change the life of her little boy. Nicole and Brian Rogerson's son, Bryce, was born in 2005 with hypoplastic left heart syndrome (HLHS), a congenital heart defect in which the left side of a child's heart is underdeveloped. Her miracle baby's first heart surgery was in utero, when Nicole was just 26 1/2 weeks pregnant. His second took place at just 10 days old.
But by the time Bryce was 6 years old, doctors told the Rogerson family that the heart they'd cut open and repaired time after time was putting too much stress on his lungs. The 6-year-old, they said, was going to need a heart transplant.
That was March 2011, three years ago, when doctors listed Bryce on the transplant list. And then came the call on January 14. Doctors had found 8-year-old Bryce a new heart.
Nicole screamed. She skipped up and down the hallway of her family's home in upstate New York. Then she called Brian -- who was away on a hunting trip in Alabama -- and found a sitter for their younger son, Bryan.
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She packed Bryce and older daughter Emily in the family's car, and she started the drive to New York City to Morgan Stanley Children's Hospital at Columbia Presbyterian where her son would soon get the hospital's first pediatric heart transplant of 2014.
Nicole and I grew up together, and I am part of Team Bryce, a huge group of family, friends, and now strangers who have given the Rogerson family support via a Facebook group where the mother of three posts constant updates about her son's progress.
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In honor of American Heart Month, I spoke with Nicole about congenital heart defects -- the most common type of major birth defect in American children -- and what it's like when your child receives a transplant of a major organ:
Remind me of everything that's happened with Bryce, leading up to the transplant:
We got the [HLHS] diagnosis when I was 22 weeks pregnant. He's had in utero surgery, then three open heart surgeries; the first open heart was at 10 days old. He had a second when he was 7 or 8 months old, and then in October of 2008, he had his third open heart. He's also had nine catheterizations.
His lungs were really crappy when he was born, and in 2010, he was diagnosed with plastic bronchitis. It's something common in cystic fibrosis patients -- mucus builds up in the lungs and it can build up and asphyxiate them.
So his lungs are the issue, not his heart?
There was pressure on the lungs from the way the heart was pumping blood into the lung. Once they decrease the pressures on the lung, they believe the lungs will get better. So yeah, he really had to be transplanted because of his lungs.
He will still be on breathing treatments for the plastic bronchitis for six months to a year after [the heart transplant].
Walk me through the night you got the call about Bryce's heart:
It was after 9 at night, but the school had a planned a two-hour delay the next morning, so the boys were in Bryce's room watching TV. The phone rang and it came up on the caller ID, "private number."
I answer and it's a pediatric nurse from the cardiac chain. She says, "Hi Nicole." I had just talked to her; we'd just been down for Bryce's appointment.
She tells me, "We have a heart," and I'm like, "Are you kidding me? Are you freakin' kidding me? Oh my God, oh my God."
Do you know how they made the match of this heart to Bryce?
The donor's information goes into the database and a computer spits out everybody who is a match. Donations go to the closest transplant center unless someone has a bigger need -- which is how it should be. You'd want the organs to go to somebody who is sicker than your child.
They have an hour to decide -- the transplant team does -- whether they want it.
What happened when you told Bryce?
He started crying! One of his biggest worries is "How am I going to hand in my homework?!"
How were you feeling about sending him into that operating room?
We've been through the three open hearts so you almost don't have a choice. It has to be done; there's no use crying about it. It's almost like a normal part of our lives. It's so weird to think that he is not a hypo-plas kid anymore. He's going to be a normal kid except for a few medicines!
What do you know about the donor?
We don't get to know anything about the donor family. That's all up to them. When we put Bryce on the list, we said they can contact us, but that's up to them.
We have to wait six months to even send them a letter to say thank you.
What are you going to say?
What do you say?
They gave my son the greatest gift; they gave him the gift of life. Their child is living through our child now ... hopefully they find comfort in that.
***
Bryce is still in the hospital, and he's got a long road ahead of him, but the Rogerson family also has a huge support system praying for the now-9-year-old (he celebrated his birthday in the hospital over the weekend).
Are you an organ donor yet?
Nicole and husband Brian are both signed up to be organ donors, and if there is one thing they most hope comes out of sharing Bryce's story, it's that more people sign on their driver's license to give the gift of life. You can find out more about organ donation or about congenital heart defects.
Images via Nicole Rogerson
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