Hayes Kalergis spent most of his brief life in and out of doctors' offices and hospitals, being poked and prodded as he endured test after test while specialists tried to figure out what was wrong with him.
If you go
What: Charleston March for Babies
When: April 26; registration begins at 8 a.m., walk at 9 a.m.
Where: Cannon Park, 261 Calhoun St., Charleston
More info: www.marchofdimes.com or call 571-1776
In the future, other babies can be spared that trauma with a little stick in the heel in the first hours of their lives.
"No one thinks they're going to lose a child," said Hayes' mother, Arien Kalergis, a pediatric nurse at the MUSC Children's Hospital. "No one should lose a child."
Kalergis and her family - husband, David Kalergis, and daughters Greyson Webb, 12, and Porter Kalergis, 10 months - are this year's March for Babies ambassadors.
"I am so honored that they are going to allow me to share Hayes' story with this disease that was so rare," she said. "They felt like it was important that they help in the process of identifying these kids so that no one has to go through what we went through."
The Kalergis' story is "very powerful and a huge deal," said Meredith Repik, executive director of the March of Dimes in the Lowcountry. March of Dimes' mission is to help moms have full-term pregnancies and research the problems that threaten the health of babies.
In January, the state Department of Health and Environmental Control announced plans to expand the Newborn Screening program to include a test for Severe Combined Immunodeficiency, the rare disorder that claimed Hayes. South Carolina will join 19 other states that currently test for SCID.
Newborns with SCID, sometimes referred to as "bubble boy disease," lack the white blood cells that fight infections caused by viruses, bacteria and fungi. Early diagnosis is key to survival.
"At the time of Hayes' birth, we did not have this screening," Repik said. "Had we had it, there is a chance he would have survived."
Hayes Coleman Kalergis was born on Jan. 31, 2012, weighing in at 6 pounds, 11 ounces.
"From head to toe, he appeared to be a healthy infant," said Kalergis.
Days later, things changed.
"Gas, reflux, horrible burps, colic episodes. It was like walking on eggshells with him," she said. "He was a very, very upset baby. He cried a lot and I could tell he was very uncomfortable."
Hayes had several tests as doctors tried to diagnose what was wrong.
He was admitted to the hospital, to the unit where Kalergis works, with a platelet count of 5,000. The normal range is 180,000 to 400,000.
He had a bone marrow biopsy, skin biopsy, skeletal survey, chest X-ray, abdominal ultrasound, a blood transfusion and tons of labs.
"Needless to say, this was a taxing and emotional experience," Kalergis said.
After five days, he was sent home as an outpatient with the hematology oncology clinic. Then his allergist immunologist became suspicious of Omenn Syndrome, a form of SCID.
"I asked the doctor if it was named 'omen' because it was bad," she said. "She was like, 'No, but it's not good.'"
More tests followed, including testing to see if Hayes' parents were potential bone marrow donors.
"I didn't know what the treatment was and all of a sudden they're telling us that he's going to need chemotherapy, a bone marrow transplant," Kalergis said. "There's so much information coming at us. We left the doctor's office that day with our stomachs in our throats, our heads spinning, and a new fear brewing inside about what may be wrong with our sweet boy."
They took him to Duke University Children's Hospital, where he had a stem cell transplant on May 24. He began improving.
"We were so hopeful," Kalergis said. "He was doing what he was supposed to be doing to move toward recovery, but unfortunately, somewhere along our journey, Hayes was exposed to a virus called CMV. Most people have been exposed to it, but for someone who doesn't have an immune system, it can be deadly."
Hayes died from respiratory failure on June 20, 2012.
"We just didn't know what was happening with him for so long," she said. "Once we were able to identify what was going wrong, the doctors had a game plan, but it was just too late. That shows what a difference a few weeks can make."
In the wake of her baby's death, Kalergis learned that the newborn screening could have identified SCID at birth.
"I was so overcome with grief and anger," she said. "Whether or not Hayes would have lived, I don't know, but I do know there's a 93 percent survival rate when children are properly identified and treated at birth."
She started working with other health care officials, including Dr. Maria Streck, pediatric immunologist at MUSC, to get the screening added for all newborns.
"Early detection is imperative and screening for SCID will guarantee that children who have the disease can receive appropriate medical care prior to developing any manifestations," Streck said. "Through newborn screening and early detection, we can achieve a very favorable outcome for a disease that previously took the lives of many children."
DHEC currently screens for 28 metabolic conditions recommended by the March of Dimes and the American College of Medical Genetics, in addition to 24 secondary metabolic conditions that can cause severe problems if not found very early in life. A 1976 law made newborn screening mandatory in South Carolina.
DHEC is working with a number of partners, including the March of Dimes, to incorporate SCID testing, possibly as early as this summer.
Seven or eight confirmed cases will result from about 55,000 screenings annually, DHEC predicts. One or two will have "classic" SCID.
"Maybe not this year, but eventually there's going to be a child that pops up," she said. "Someone's going to be identified with this same disease. Ideally, the goal is for these kids to be treated at MUSC. The March of Dimes has a wonderful support program already and I think we can provide the same kind of support and awareness for SCID."
She hopes it will spare other parents the grief she went through.
"The March of Dimes believes that every baby deserves a healthy start in life," Kalergis said. "Every parent should be able to take a healthy baby home from the hospital. Our goal when we first began the campaign was to help create awareness in the hopes that it would lead to adding this to the newborn screening. Somehow we lucked out in the process and it got added before we really even got started."
Reach Brenda Rindge at 937-5713 or @brindge on Twitter.