Parker Reese Singletary lived only 20 hours, but in death she has had a lasting impact few achieve in a long lifetime.
Born two months prematurely and weighing 3 pounds, 12 ounces, Parker suffered from a rare condition called congenital diaphragmatic hernia. The muscle wall separating her chest cavity from her abdominal cavity did not close properly in the womb. As a result, her stomach and intestines filled the space where her lungs were supposed to develop.
Doctors at Duke Children's Hospital warned the girl's parents, Jessica and Ashley Singletary, to expect the worst. CDH, which occurs in about one in every 3,000 to 4,000 births, can be fatal depending on the severity of the defect.
But instead of resigning themselves to a tragic first pregnancy, the young Bladen County couple established a foundation to honor their daughter.
"We felt hopeless," said Jessica Singletary. "We don't want other families to feel hopeless."
In the two years since its formation, the Parker Reese Foundation has done as much to improve the quality of life of babies born with CDH and their families as most medical centers with advanced technology and research.
The fledgling foundation provides free housing for couples who give birth to children with the condition at Duke or UNC hospitals and the support of a loving network of families who have gone through a similar experience.
The foundation has also urged Duke to upgrade its care and make its Web site more useful for families expecting a CDH child. Now it is raffling off a Chapel Hill home to raise money to retire the mortgage on the guest house and provide researchers with money to study the disease.
"I've never really met a family that has taken this much of an interest," said Dr. Michael Cotten, associate professor of pediatrics at Duke. "They've taken it to a national level I never would have dreamed about."
For the Singletarys - he is 29 and a farmer, she is 32 and a former paralegal - the foundation has become a life's calling. They have delayed having another baby and have thrown themselves into the work of honoring their firstborn.
Every other weekend, the couple drive 2.5 hours from their home in the southeastern North Carolina town of Bladenboro to Hillsborough to make sure the guest house is clean and stocked with food. They spend long hours on the phone with anxious parents who have just received the terrifying diagnosis. They attend birthday parties and funerals.
"I made a promise to my daughter that I would do everything in our power so that families like our own had some source to go to emotionally and financially," said Jessica.
When her doctor referred her to a specialist after a routine ultrasound in the 27th week of her pregnancy, Jessica knew something was wrong.
On April 17, 2006, the specialist broke the news about CDH, a condition the Singletarys had never heard of. The delivery would have to take place at Duke because the local hospital was not equipped to handle it. As for her daughter's chances of surviving birth, they were about 50/50, the couple was told.
Jessica and Ashley went home and got online, but they found scant information about what to expect.
As it turned out, they would have little time to learn. Jessica went into labor the first week of May and delivered Parker by cesarean section at Duke. Parker stopped breathing soon after her birth and had to be resuscitated numerous times before she was stabilized on life support.
Nurse Venus Standard knew the baby was in trouble. She gently pushed aside the visiting relatives, transferred Jessica to a wheelchair and sped her into the neonatal intensive care unit to allow her and Ashley to spend as much time as possible with their daughter.
Jessica said the sight of her daughter prompted a feeling of intense love she had never felt before. The couple took turns holding Parker until she took her last breath in her father's arms.
In the days following her death, the Singletarys sought refuge in their faith.
"God could have chosen anyone to be her parents," Jessica said. "He chose us."
A few months after Parker's death, Jessica bought her husband a German shorthaired pointer from a breeder in Hillsborough. The couple told the breeder, Rob Maguire, their story. After they left, Maguire read a fuller version on Jessica's blog.
A spacious surprise
A few months later, Maguire called and said he and his wife had an extra house. Could the Parker Reese Foundation use it?
Suddenly, the foundation found itself with a three-bedroom, two-bath brick home nestled on three acres on a bucolic Hillsborough road.
To date, 10 families with CDH babies have stayed in the house free of charge. They are allowed to bring their pets and can work from a home office equipped with a computer, printer and fax.
Kellie Myers and her husband, Brad, lived in the home for nearly five months. The New Bern couple said that having a place close to Duke meant Kellie could deliver her son, John Carter, at full term, giving him an opportunity to fully develop in utero.
"They didn't just provide us a house," said Kellie Myers. "They gave our son a chance."
Unlike Parker, who was born with a hole in her one good lung, John Carter fared better. Recently, the Singletarys attended his first birthday party.
Now the Singletarys are seizing another opportunity to expand their reach. Venus Standard, the nurse who had cared for Parker back in 2006, was watching CNN one night when she saw a story about a family who raffled off its house.
Standard was hoping to move herself. What if she sold her house to the Parker Reese Foundation so that the foundation could raffle it off as a main prize in its fundraiser?
The Singletarys loved the idea. If enough raffle tickets are sold, the foundation will be able to pay off the remainder of Maguire's mortgage on the Hillsborough guest house, and it might have enough left over to fund research into CDH.
For the Singletarys, who say the passage of time does not make their loss lighter, the raffle is another opportunity to honor their daughter. And toward that goal, they'll do anything to make sure that her brief life has lasting impact.
