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Monday, July 6 was Jacob's birthday. Ed & Michelle talked with Sandy Wells
and told the story of yet another miracle. Check it out!
By Sandy Wells
CHARLESTON, W.Va. -- He's everything a year-old baby should be, winsome and plump with wispy blonde hair and big blue eyes, cute enough for a Gerber commercial.
He's a happy little guy, curious, alert and outgoing, a little full of himself. He just cut his second tooth. He's ready to walk, just one gripped finger away from taking off. He wants grownup food, no more pureed baby stuff. He loves yogurt melts and, of all things, peas.
"He's thriving," his father said.
On Monday, Jacob Ryan Roth marks his first birthday.
Naturally, his proud parents planned a big birthday party, a Fourth of July cookout at grandma's, plenty of burgers and hot dogs, lots of cousins running around. Jacob loves ducks. A family friend baked a duck cake.
"It was our victory party," said his mother, Michelle.
"It was a pretty big deal to us," his father said. "He's our miracle baby, an amazing baby touched by God. He wasn't supposed to be here."
Jacob was born with a serious heart defect called tricuspid atresia, an absence of the tricuspid valve essential for supplying the body with oxygen.
"It's a nasty baby killer," his father said.
Jacob functions now with only half a heart, just two working chambers. But without two operations, his heart wouldn't be working at all.
His father, Ed Roth, is better known as Ed Roberts, WQBE program director and host of the afternoon drive shift. Radio listeners rallied behind the struggling newborn. They tracked his condition on the WQBE Web site. They prayed for him. As news of the baby's plight spread, churches formed prayer chains.
"When Michelle and I found out about his condition, there was little hope for our baby," he said. "If you have ever doubted the power of prayer, don't."
The praying started for Ed and Michelle in late February last year following a routine prenatal ultrasound to determine the baby's sex. The news thrilled them. "We were high as can be," Roth said. "Michelle's family didn't have any boys."
A call from the doctor that afternoon changed everything. The ultrasound showed some abnormalities. The doctor referred them to a specialist in high-risk pregnancies. Additional ultrasounds brought the dire diagnosis.
"The heart has four chambers and each one sends blood in different directions, a pump system," Roth said. "They couldn't see any separation between the heart walls. In other words, he had a useless heart."
He won't ever forget the day they got the news. "We drove to the park in St. Albans. It was pouring rain. We sat there staring at the river. We didn't know what to say to each other. A song played on the radio, George Strait's 'I Saw God Today.' That's the point when I lost it. We cried and cried. We were scared to death."
The next step was Cincinnati Children's Hospital.
Doctors in Cincinnati offered the first glimmer of hope. Roth likes to think of it as the first miracle. "There has been miracle after miracle, answered prayer after answered prayer."
In most atresia cases, he said, blood can't move from the heart to the lungs to pick up oxygen. Doctors in Cincinnati discovered that Jacob's heart was severely defective but not totally without structure. He didn't have the valve that lets blood travel from the right atrium to the right ventricle. He also was missing the entire right ventricle.
"But the heart had rerouted itself. The pulmonary artery had connected to the left ventricle. His heart had found a way to get blood to the lungs."
That path would work for a couple of weeks, long enough for Jacob to gain some strength for the ordeal that awaited him. Doctors had determined that they could correct the defects with a series of three operations.
"A lot of people said a heart transplant would be easier than three surgeries," Roth said, "but doctors said that because of demand, he wouldn't get a heart."
In a little over two weeks, Jacob's body started to shut down. The heart had to work too hard. "The output side of his heart was connected to his lung, so blood was just coming out of the heart and going back into his lung in a loop. Very little blood was going through his body. He was burning more calories in his sleep than most people would burn running a marathon."
His tiny body couldn't take it. "He wouldn't wake up. He couldn't eat. He was unresponsive. He was just worn out."
He had the first surgery July 30, a procedure to bind the pulmonary artery to slow pressure to the lungs and force blood through the body.
In ICU after the surgery, Jacob crashed. "We came running around the corner. It looked liked 20 doctors in the room trying to resuscitate him. My wife fell on the floor screaming."
They got him back. "The surgeon told us, 'You need to be strong. He has a catastrophic heart defect. This is the smallest surgery we're doing. You have to toughen up and realize what you are in for.'"
The first surgery was intended to buy Jacob time, to allow his body to grow enough to withstand the main operation. He made it to seven months before his condition worsened.
In a blog entry to radio listeners, Roth described his concerns: "Without this surgery, he will not make it much longer. His little heart is working overtime. It would be like holding a stack of books on one arm stretched out in front of you ... Yes, you could hold them, but very soon your arm will drop and the books will fall unless something is done."
During the second operation, surgeons rerouted blood to feed directly into the lungs. "This time, they literally took the artery that the sends blood into the heart and connected it to the lungs so upper body blood will go to the lungs first, not the heart.
"This eliminated all function of the right side of the heart. It was much more intrusive because they rearranged his heart and actually had to stop it to remove the walls and lining between the left and right sides of his heart."
The second surgery provided adequate blood flow through his body for the first time. The adjustment caused painful headaches that required morphine. "Think of standing on your head and blood rushing to it," Roth said. "His body wasn't used to having real blood, just a little that seeped out. But the headaches told us that the surgery was working."
He faces a final operation sometime after Christmas to improve his blood circulation.
Jacob's parents believe the worst is over. They focus now on building his strength and, thankfully, just enjoying him.
"He's a trooper," his father said. "I don't know of any adults who could handle what this kid has been through. He's the happiest baby I know, a ball of energy. You can tell he's had God working in his life."
The prognosis looks good, he said. "He won't be able to play contact sports, no football, and he will have to take care of himself as he gets older because he only has half of a heart. But he will do just fine."
The Roths hope sharing Jacob's story will inspire others facing difficulties. "People need to know that when bad things happen, there is hope, that when they have obstacles in life, they will get through it," he said.
Reach Sandy Wells at san...@wvgazette.com or 304-348-5173.