Wayne and Sheridan Gluff have lived through every new parents’ nightmare.
Their infant son, Ryan, died on April 24, 2010, of a congenital heart defect that might have been discovered with pulse oximetry screening — a screening he never received. He only lived four days.
In honor of Ryan’s memory, the Gluffs, a young 20-something couple, will be at Cielo Grande Park on Saturday for the annual March for Babies, a fundraising event held each year to support the March of Dimes. Wayne says the annual event has become a family affair with many friends and relatives pitching in to help stage the March for Babies.
Coordinating the annual March for Babies is not the only activity the Gluffs have been involved with since Ryan’s tragic death.
Due to the Gluffs’ efforts, along with the March of Dimes and Rep. Nora Espinoza, R-Roswell, there now is a state law that requires the non-invasive testing for Critical Congenital Heart Disease in newborn infants.
CCHD, which is difficult to identify without the screening, accounts for about 30 percent of all infant deaths caused by birth defects, according to the Centers for Disease Control and Prevention. The condition often can be treated with surgery when identified early.
Under this law, hospitals statewide will screen newborn infants for CCHD using a non-invasive instrument called a pulse oximeter, which uses a sensor placed on the skin to identify the pulse rate, as well as low levels of oxygen in the blood, a sign of CCHD.
This technology is the most effective way to detect serious health problems in otherwise well-appearing newborns. If the baby screens positive for oxygen levels that are too low, further testing can be done, such as an echocardiogram, which is an ultrasound picture of the heart.
“You never know, and we certainly had no idea about the screening,” Wayne Gluff said. “We thought we were just the parents of a perfectly healthy baby.”
Gov. Susana Martinez on March 4 signed into law legislation to require that newborns in New Mexico be tested for critical congenital heart disease.
The governor signed the bill at Lovelace Regional Hospital in Roswell, with the Gluffs in attendance.
Martinez said adding CCHD to the list of conditions for which hospitals screen newborns will save infants’ lives.
“By adding testing for CCHD to the newborn screening panel, more New Mexico babies will grow up to live happier, healthier lives with their families,” Martinez said in a statement.
The bill, House Bill 9, was sponsored by Espinoza. It was unanimously passed by both the House and the Senate during the 30-day legislative session that ended Feb. 20.
March of Dimes New Mexico State Director Becky Horner also praised this legislation, saying, “We are proud of Gov. Martinez and New Mexico legislators for supporting newborn screening and for ensuring that every baby be given the best chance at a healthy start in life.”
March of Dimes, a nonprofit organization that works to improve the health of women of childbearing age, infants and children by preventing birth defects, premature birth and infant mortality, has been instrumental in expanding newborn screening.
The Gluffs became involved with the March of Dimes after Ryan passed away.
“After we lost Ryan, six to seven months later, I was talking with my aunt about the March of Dimes in Texas,” said Sheridan. “She called me and told me about the March of Dimes, and I learned that the March of Dimes is involved not only with premature babies, but with all aspects of pregnancy.”
The Gluffs got in touch with March of Dimes in Las Cruces and became involved with the local March for Babies in April 16, 2011.
Sheridan has helped coordinate the March for Babies for three years now, and she and Wayne will be at Cielo Park on Saturday to participate once again.
“Sheridan became involved with the March of Dimes really as a way to cope with the loss of Ryan,” Wayne said.
The MOD contacted the Gluffs asking them to support the proposed legislation calling for the pulse oxymeter screening.
“We had to make three trips to Santa Fe, and one to Hobbs, but it was worth it,” Sheridan said.
“Nora was wonderful, she was really the champion of this bill. She had two bills in the session, but she said if she only gets this one passed then she will have accomplished something,” Sheridan said.
Sheridan works as a legal assistant at Patterson Law Firm and Wayne is an assistant manager for Home Depot. Both are natives of Roswell, and they have a 2 ½-year-old son, Kaleb.
“Working at Home Depot, we have a lot of employees who have babies,” Wayne said. “I always mention the importance of screening, and tell them not to take it lightly.”
“Heart defects kill more infants and children than all the cancers combined,” said Sheridan.
She said the chances for Ryan’s defect to occur in a newborn is about 1 in 100.
“I always tell expectant mothers to be sure and talk to their gynecologists, and find out everything they can,” Sheridan said.