he nightmare seemed to be repeating itself.
Jennifer and Jason Curry watched helplessly as doctors staged a frantic attempt to revive their son, Sammy. He had suddenly stopped breathing, turning a dark gray as his heart gave out.
Just two years earlier, they lost their second son, Logan, to a rapidly destructive disease. They prayed with everything they had to prevent that from happening again.
“We’ve buried a child before,” Jennifer Curry said. “I couldn’t handle that happening again.”
Sammy survived, but the ordeal has changed his life and that of his family forever. The Greenwood family has become advocates to raise awareness of congenital heart defects. Using social media, the Currys have tried to spread their story so parents know how to detect a heart defect in their child, even before birth.
They want to make it known that heart disease doesn’t just strike older adults but can wreak havoc on newborns as well.
“We had no idea what having a congenital heart defect meant. If I had known what I know now when I was pregnant, I would have been better prepared to approach it,” Jennifer Curry said. “We hear that heart problems are just for older people and for women. But our babies are dealing with this too.”
Sitting on his mother’s lap, Sammy bounced excitedly up and down.
He has the brain function of a 3-month-old baby, a result of the loss of oxygen that occurred after surgery on his damaged heart. He can’t sit up by himself yet and has only started rolling side to side.
But the moments of magic that Jason and Jennifer Curry realize far outweigh the struggles. He loves a camera, mugging and smiling whenever anyone points one at him.
Sammy has started babbling, managing to say, “dadada” and “mamama.”
‘They know us at Riley’
Having another child wasn’t part of the plan for Jennifer Curry, 30, or Jason Curry, 36. Logan, had died in 2011 at 4 weeks old. He had inexplicably started suffering seizures and a stroke, damaging his brain and eventually leading to his death.
The thought of another pregnancy was too painful, Jennifer Curry said. But they acknowledge that God had other plans with Sammy. He was born at 36 weeks, and though he was premature, he appeared to be healthy.
Doctors detected a slight murmur upon listening to his chest and ordered an ultrasound. The scan from Riley Hospital for Children at Indiana University Health revealed that Sammy’s heart was severely malformed.
Once again, they were in the hospital, scared for the life of their son.
“They know us at Riley a little bit too well,” Jason Curry said.
The condition was called Tetralogy of Fallot. His heart had a hole in it, meaning that blood that had yet to be enriched with oxygen mixed with enriched blood.
On one side of his heart one of his arteries is too narrow, which also impedes oxygen flow.
“We noticed he was blue all the time. Around his mouth, he always looked blue. He wasn’t getting the oxygen he needed,” Jennifer Curry said.
Because Sammy’s body was only delivering about 78 percent of the oxygen a normal infant would get, his cardiologist, Dr. Robert Darragh, recommended implanting a shunt that would ease the transport of blood to
his lungs.
The shunt would be a temporary fix, until Sammy was strong enough to get the first of numerous surgeries to fix his heart defects.
The surgery to start permanently repairing Sammy’s heart defect was scheduled for July. The surgery was intensive, scheduled to last up to nine hours, Darragh said.
This would be the first of at least three operations on the heart. But research had shown that children who get the surgery can live a long and normal life, Darragh said.
‘Everyone rushed in’
Sammy came through the initial operation without any complications. He was in very good condition in the hours afterward, so much so that nurses took the breathing tube out and let him breath on his own, Darragh said.
The next day, though, brought any hopes crashing down. Sammy was still doing well when his mother fed him, and he was so hungry that doctors suggested giving him a bottle of formula an hour later.
Jennifer Curry looked away for a moment, and all of the sudden alarms started blaring.
“I looked up, and he was almost black,” she said. “I just backed into a corner as doctors and everyone rushed in. I kept saying, ‘I can’t do this again.’”
Sammy’s coronary artery has spasmed, closing the main artery to his heart and preventing blood flow, Darragh said.
Nurses gave him chest compressions and tried to restart his heart with a defibrillator. They worked for an hour, enough to get a rhythm in his heart where they could move him to the operating room.
Adrenaline kept Jennifer Curry from panicking in those initial minutes. But as she called her father to tell him the terrible news, she burst into tears.
“I lost it. The nurse had to take the phone to let him know what was happening,” she said.
As nurses raced Sammy to the operating room, Jennifer Curry pushed forward. She planted a kiss on her infant son’s head and whispered to him, “Buddy, you better fight. Just fight.”
In what the Curry family sees as a series of small miracles, Sammy’s room was right next to the operating room the surgeons needed. It had already been prepped for another patient’s surgery, so all of the machines needed to save Sammy’s life were ready to use.
“Everything that they needed, all of the people they needed, were right outside his room,” Jason Curry said.
‘Affected everything’
Surgeons put Sammy in forced sedation, stabilizing his heart so it would pump blood. They hooked him up to a device called an extracorporeal membrane oxygenation machine, or ECHMO. The machine pumped blood and breathed for Sammy, allowing his body to rest and heal.
When he finally came off the device after five days, doctors were convinced his heart was strong enough to support him, though they monitored him constantly.
A new concern arose, though. Sammy’s brain had been without oxygen for about an hour during his cardiac arrest. Doctors wanted to see how it had affected him.
Scans showed he had suffered traumatic brain damage. He would likely never walk, never talk and would not be able to see.
“The damage was all over his brain, so it affected everything,” Jennifer Curry said.
Bob Newlin, pastor at Smith Valley Baptist Church, stayed with the Curry family through much of the ordeal.
The family had started attending the church two years earlier, and Newlin helped guide them spiritually while providing them with a respite from stress of the situation.
“They had so much going on at different levels. I’ve tried to be a source of comfort and peace to that,” Newlin said. “I would go and give them a chance to get to away from the situation. I’d stay with Sammy while they went back to the Ronald McDonald House to just rest for a short while.”
Since leaving Riley Hospital for Children in August, Sammy has developed in ways his doctors never anticipated. He can see with the help of glasses, and laughs and babbles.
At 15 months old, he weighs
19 pounds.
The family visits the heart center at Riley Hospital for Children every two weeks and has routine checkups with different doctors throughout the month.
Sammy will need at least two more surgeries to further repair the heart defect. But once finished, it’s rare that he would experience additional complications, Darragh said.
The residual effects from his near-death experience will linger throughout his life.
‘OK to ask questions’
Sammy goes to physical therapy to help his muscles develop normally and recently started speech therapy. Because doctors are unsure how developed his speech will be, they hope to teach Sammy sign language so he can communicate better.
The family knows that most children with heart defects don’t go through everything Sammy has. An overwhelming majority of children have the repair surgery and live healthy lives.
But Jennifer and Jason Curry hope to use their situation to help educate others about congenital heart defects.
They started Sammy’s Angels, a Facebook page dedicated to heart defects. It started as an informational clearinghouse, where friends and family could get updates on Sammy’s condition and leave their thoughts for the family. The page has grown to help distribute information they’ve found about defects.
Going through this and doing research on her own, Jennifer Curry has learned there are questions to ask to prepare in case your child has a heart defect. The Children’s Heart Foundation shows that 40,000 babies are born each year with some kind defect.
At their 20-week ultrasound, moms-to-be should ask the doctor if the heart has all four chambers and if the blood flow is correct, Jennifer Curry said.
A simple test conducted after birth, the pulse oximeter, can reveal if the baby’s oxygen level is normal.
“There is so much information that I’ve put on Sammy’s Angels Facebook page,” she said. “I want women to know that it’s OK to ask questions and say no if you don’t agree with something.”
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Congenital heart defects
By the numbers
- Congenital heart defects are America’s and every country’s No. 1 birth defect.
- Nearly one of every 100 babies is born with a congenital heart defect.
- Congenital heart defects are the leading cause of all infant deaths in the United States.
- Each year approximately 40,000 babies are born in the United States with a congenital heart defect.
- Each year more than 1 million babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
- There are an estimated 2 million congenital heart defect survivors in the United States.
- More than 50 percent of the congenital heart defect survivors are adults. This is the first time in recorded history that is case.
- More than 50 percent of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
- There are more than 40 types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
- In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined.
- Funding for pediatric cancer research is five times higher than funding for congenital heart disease.
- In the past decade death rates for congenital heart defects have declined by almost 30 percent due to advances made through research.
— Information from the Children’s Heart Foundation
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For more information about congenital heart defects, the following Web sites are available:
- American Heart Association, heart.org
- National Institutes of Health, www.nlm.nih.gov/medlineplus/congenitalheartdefects.html
- March of Dimes, www.marchofdimes.com/baby/congenital-heart-defects.aspx
- Centers for Disease Control and Prevention, www.cdc.gov/ncbddd/heartdefects
- The Children’s Heart Foundation, childrensheartfoundation.org
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Who: Sammy Curry
Age: 15 months
Home: Greenwood
Family: Parents, Jennifer and Jason Curry; brother Landon, 5
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“We hear that heart problems are just for older people and for women. But our babies are dealing with this too.”
Jennifer Curry, whose sons had heart problems
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