We were interviewed by the Houston Chronicle after Masons transplant. Story ran Christmas Day, 2002. Front Page News!!!!
Well, I guess the link died. I’ll see if I can find a copy of the story somewhere.
A child’s Christmas `miracle’ / The family of a young boy who struggled with a heart defect shares his first healthy holiday after a lifesaving transplant.
MIKE TOLSON Staff
WED 12/25/2002 Houston Chronicle, Section A, Page 1, 3 STAR Edition
DAYTON – The decorations were up and the holiday plans already made. Christmas was going to be a modest affair for Kevin and Brandi Black, a time for quietly celebrating at home the greatest gift they could imagine – their first child.
Mason Black was born the morning of Dec. 12, 2000. It was a hallelujah moment. His parents struggled for three years to conceive him. Kevin had given up hope that it would happen without medical intervention, and the couple had already made an appointment with a fertility specialist when Brandi’s pregnancy surprised them.
The joy of his birth did not last. After a few minutes in his mother’s arms, Mason appeared to be getting too little oxygen. He was placed in an oxygen tent and whisked off to the intensive care unit of Bayshore Medical Center in Pasadena. A day later, doctors stunned his parents: Without major and immediate surgery, their son would die. Even then, long-term survival was no sure thing.
Mason’s heart was bad. A second surgery and then a third would be necessary down the line, just to buy time. Sooner or later, the heart would have to be replaced or he would die.
Brandi, 25, spent the first night of Mason’s life in tears, waiting for her husband to call with the news that Mason had died. The call never came, but much of the last two years has been spent waiting for the other shoe to drop. For two hellish years, they watched their child too weak to eat well, too weak to play without suddenly collapsing, while they waited for a heart donor.
Then, on Oct. 23 of this year, the Blacks received a life-changing call, but not the one they had been dreading. A donor heart had been found, and Mason will be tearing open the Christmas wrap this morning with the exuberance of a healthy 2-year-old.
But along the way, this couple from Liberty County received a medical education they never expected and a personal test of faith they could hardly describe.
As the weeks of 2002 slowly ticked by, it became apparent to them that time was in ever-shorter supply. Mason’s heart was failing despite two operations. If he picked up any little bug, even a simple cold, it might tax his body more than it could stand.
“The problem with a kid like Mason is not (that he’s on) a consistent downward vortex until they get sick enough to go into the hospital,” said cardiologist Jeffrey Towbin, who heads the transplant team at Texas Children’s Hospital. “They get a minor respiratory illness or diarrhea illness, and they don’t handle it very well. They have no cardiac reserve.”
So the Blacks huddled at home, away from the world and all its infections, and waited. They dared not pray for the death of someone else’s child to supply the desperately needed heart. They tried not to even think of that. But the brutal truth was that it was Mason’s only hope.
“Every time we heard on TV of a child dying, we wondered whether that would be Mason’s heart,” Brandi said. “Everybody always says the Lord won’t give you more than you can handle. I don’t know. With us he was pushing it.”
Mason’s condition, hypoplastic left heart syndrome, sometimes is hard to see before the child is born, an unfortunate thing because it is a devastating defect. The chambers, valves and related vessels on the left side of the heart are so malformed that they cannot efficiently pump blood.
Not long ago, this defect was fatal. Even when transplants became feasible thanks to anti-rejection drugs, there were simply not enough hearts to go around.
A major surgical advance 10 years ago by cardiologist William Norwood changed everything. Doctors using the three-stage procedure he pioneered, to be completed before the child is 3, can give a child time to find a replacement heart or, potentially, to live into adulthood with the reconstructed heart, depending on the extent of the defect.
But Mason was unlucky. The first step of the procedure, done right after he was born, was never going to be anything but a temporary fix.
“These defects come in many flavors,” Towbin said. “Even though the operation went well, his heart never did very well. The pump just wasn’t good enough.”
Doctors performed the second stage in May 2001. The effect was immediate – and deceiving. Mason, who had not been active enough to even feed normally, perked up. He gained enough strength to suck from a bottle. He began to develop like a normal baby.
But in April, doctors discovered that a leak in Mason’s heart was pooling blood in the defective left chamber. The swelling put pressure on the functioning half.
As a result, Mason was not strong enough to make it through the next surgical procedure. Transplantation gained renewed urgency. There was no other option, Towbin said.
“I thought we had been given his death sentence,” Brandi said. “I didn’t think he would live long enough to get a heart.”
A shortage of donors makes any potential transplant a dicey proposition. A spokesman for Lifegift, the designated organ-procurement organization for the Houston area, said a third of those on a waiting list die before getting the organ they need.
With children and hearts, the field of potential donors is narrower. The heart must be the right size or it won’t fit. Nevertheless, the Blacks were told that 70 percent of children needing hearts ultimately get them – which aren’t bad odds, unless the child is yours.
The months passed. Mason was not obviously sicker, but he was obviously sick. One day in late July, his parents got a reminder of how sick.
“He was playing down near my legs, and then suddenly he let out a little cry and then lay down limply on the floor,” said Kevin, a 29-year-old construction planner for Kellogg, Brown & Root. “He went all pale and sweaty.”
They rushed him the 45 miles to Texas Children’s, wondering if this was the moment they had feared. Doctors determined he was suffering from an arrhythmia, not an immediately threatening problem but another indicator of how his heart was struggling. It went away. The fear did not.
“In our minds, we knew he was in heart failure and getting worse,” Kevin said. “I wasn’t sure he was going to make it. At any time his heart could say, `That’s it.’ ”
Beyond the physical and emotional toll was the spiritual. Kevin began to wonder whether God was punishing him. He had a hard time accepting that something so terrible could happen to an innocent child. And then there was the knowledge of what it would take for Mason to see his second birthday.
“Every morning when I woke up, I knew that somebody’s kid had to die for mine to live,” he said, his eyes welling up at the recollection. “I didn’t pray for it, but in essence that is what I was asking for. It weighed heavily on me. I didn’t feel right.”
Week after week went by. Every time the phone rang they wondered.
On the night of Oct. 23, just after they went to bed, the call they were waiting for finally came. Towbin said a heart was available. An hour later, just after midnight, they were at the hospital.
As the donor heart made its way to Houston, a small army of family and friends began to assemble in the waiting room. Finally word came that the plane had arrived. Kevin and Brandi stood in the rain outside to see the ambulance arrive.
Two men hopped out, bearing Mason’s future in a plastic cooler. It was like something out of a movie, with people opening doors and holding elevators as the transport team hurried through the lobby and up to the operating room.
The complicated transplant operation involves more than a dozen team members and goes on for hours. Kevin and Brandi were awed by the thought of what was taking place a few feet away, especially when doctors came to inform them that all had gone well and that the heart was beating strongly.
“It was three (hours) 39 (seconds) from the last heartbeat in the other child to the next beat in Mason,” Kevin said.
All the Blacks know of the donor is that he was a toddler who died in Texas of a brain injury.
“We want to write the parents, but we are going to wait till after the holidays. What do you say? Thank you is nowhere near enough,” Kevin said.
Eight days later, a child who had never taken an unlabored breath was allowed to leave the hospital. After a week at the Ronald McDonald House, the family went home.
Mason looks like a healthy 2-year-old. He is pink-cheeked and happy. The thin, bluish child that stares down from the family photo on the wall has been replaced by a boy indistinguishable from most his age.
Of course there are differences. A transplant is not a cure. Because pediatric heart transplants are so new, nobody knows the chances for long-term survival. Complications are inevitable. Transplanted hearts develop blockages in major arteries. Recipients also are prone to a certain type of lymphoma.
What Mason has now is time – and by contrast to his life before, quite a bit of it.
“They are trading in one bad disease for another disease, and that disease is being a transplant patient,” Towbin said. “Even if they are perfectly well, they’re a ticking time bomb. We know there are effects on other organ systems, particularly the kidneys. There’s going to be a little bit of damage there. And there will be a little bit of blockage. We will have to do another transplant. At some point along the way they develop transplant disease. But re-transplantation is doable.”
The important thing, Towbin said, is that Mason should have a fairly normal life, maybe for the next decade, maybe longer. In the meantime, researchers will pursue answers to problems that vex heart recipients. Advances are sure to be made toward developing a better mechanical heart pump.
“To take that giant leap (to a heart that will go on indefinitely), well, it’s just not happened yet. Ultimately somewhere along the way, someone will come upon a finding that will take us a long way to understanding the problems,” he said.
Mason’s parents will take what they can get. For the moment, the gift they have received seems limitless. They know the medical bills will continue to pile up – his medicines alone run about $1,500 a month, much of it uncovered by insurance.
Today, the decorations are up again. And once more a quiet Christmas at home is in store. Mason’s immune system, already compromised by anti-rejection drugs, is so tender that doctors do not want him out in public for several more months. These days are spent with mom around their small, tidy home. Others might find it a bit boring. The Blacks have already had a lifetime of excitement.
“It’s a miracle,” Brandi said, pondering the events of the last two months. “Another child’s heart is beating in Mason.”
The traditional tree in the living room, the presents beneath, the blazing lights out front – all are suddenly trivial symbols of a holiday whose real meaning smiles up at them from beneath a shock of blond hair.
“This will be the greatest Christmas ever,” Kevin said. “We’ve got our present. We’re good for the rest of our lives.”