2014 March of Dimes Ambassador is MUSC nurse, familyTweet
By Mikie Hayes
Few organizations work as hard to fight for the health of baies as do MUSC and the March of Dimes. For 20 years these two organizations have successfully partnered to make a meaningful difference in the lives of babies and families throughout the entire state.
This Feb. 10 marks the annual kickoff at MUSC for the March of Dime’s March for Babies. This signature event, now in its 44th year, will be held at Cannon Park on April 26. Funds generated from the walk support the organization’s key programs that so many families throughout the Lowcountry have come to count on.
Statewide, the South Carolina chapter of the March of Dimes provides research grants and invests in local community services. Funds raised through the March for Babies are critically important as they support many important endeavors that contribute to reducing the state’s premature birth rate, increasing access to prenatal care and funding programs that help mothers experience healthy, full–term pregnancies and research aimed at preventing birth defects and infant deaths.
In 2013, MUSC’s team was among the walk’s top teams, having raised nearly $24,000 for the effort, according to Meredith Repik, executive director of the March of Dimes. She has confidence they can beat that total this year.
“The March of Dimes counts on the support of MUSC. As one of the top employers in Charleston County and best fundraising teams every year, MUSC’s involvement allows us to continue our mission of saving babies. We are pleased to be able to support the important research that MUSC conducts,” she said. Since 2007, the March of Dimes has granted nearly $1.5 million to fund research programs at MUSC.
MUSC Infant Toddler nurse Arien Rannigan–Kalergis, right, joins husband, David, and daughters, Greyson and Porter, as they remember their son, Hayes, and serve as the 2014 March of Dimes ambassador family. Photo provided
Each year, the March of Dimes chooses a family or individual who has been touched by the work of the organization to serve as the ambassador who will share its mission to the community at the grassroots level. This year’s ambassador family includes one of MUSC’s own, Arien Rannigan-Kalergis, R.N., a nurse in the Infant Toddler Unit. Arien is joined by her husband, David, and daughters, Greyson and Porter. The Kalergises accepted this honor in memory of their son and brother, Hayes.
“When I learned we were the ambassador family, I was so moved. I was going to have the opportunity to help educate people about something very close to my heart — the importance of the newborn screen and early detection,” said Rannigan–Kalergis.
When Hayes was born at 38 weeks, weighing 6 pounds and 13 ounces, he looked like the picture of health as he breastfed and bonded with his mother. The family was discharged two days later and while Hayes was fussy and colicky, the Kalergises had no way of knowing he was suffering from a rare, heredity disorder known as Omenn's syndrome or that their time with their precious son would be short.
Omenn’s is a Severe Combined Immunodeficiency Disorder, a potentially fatal congenital disorder characterized by an infant’s inability to fight infections and a universally fatal condition if not diagnosed early and caught before infections set in, said Maria Streck, M.D., Hayes’ allergy and immunology specialist.
The disorder, caused by a severe defect in the T–and B–lymphocyte systems, typically results in a newborn contracting serious to life-threatening infections such as pneumonia, meningitis or bloodstream infections within its first months of life. For a baby to be born with Ommen’s Syndrome, both parents must carry a recessive gene. While an extraordinarily rare occurrence, both of Hayes’ parents had the gene and passed it on.
For the Kalergises, the next few months were frightening and frustrating as physicians treated each new symptom the newborn exhibited — as one improved a seemingly unrelated one would emerge. Streck put the pieces of the puzzle together, suspecting the collection of symptoms may in fact indicate Ommen’s Syndrome. She sent the Kalergises to the lab for a specific set of genetic tests that were extremely expensive and would not yield results for nearly six weeks. Had screening for SCID been a part of the regular newborn screening process at the time, Hayes’ doctors and family would have known much earlier what they were dealing with.
At the time, MUSC was not performing stem cell transplants for SCID. In North Carolina, Hayes underwent chemotherapy — a stem cell transplant and multiple rounds of antibiotics, antivirals and antifungal medications. While his situation was looking hopeful, somewhere along his journey he was exposed to cytomegalovirus, a very common virus, but due to the fragile nature of his little body after his transplant, he succumbed to CMV and respiratory failure at only 4–½ half months old.
Hayes Kalergis was diagnosed with SCID and would have benefitted from an added newborn screen test. Photo provided
“Whether Hayes would have survived or not, we’ll never know, but his chances of survival would have been immensely increased had we known from the beginning he had been born with a SCID,” said Rannigan-Kalergis.
Today, Hayes would have had a fighting chance. The S.C. Department of Health and Environmental Control worked with the March of Dimes, the S.C. Hospital Association and representatives from children’s hospitals throughout the state, including MUSC, to obtain the approval necessary to incorporate SCID testing into the agency’s Newborn Screening program. Rannigan-Kalergis and Streck were integrally involved in the effort.
Those involved in getting the testing approved credit Rannigan–Kalergis for her strength and grace in putting a personal face to a clinical, abstract process. The way she shared her son’s story in such a gentle and heartfelt way was the needed catalyst in getting this approved.
On Jan. 23, DHEC announced plans to expand NBS tests for every newborn to include SCID and other difficult– to–diagnose conditions. The panel of tests will now include a test for SCID. Because newborns with SCID lack the white blood cells that fight infections caused by viruses, bacteria and fungi, early diagnosis — as a result of the screen can gives them a chance to survive this otherwise fatal disease.
“The addition of SCID to the newborn screening panel is a very important step in ensuring good health for all children in South Carolina. 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. Through newborn screening and early detection, we can achieve a very favorable outcome for a disease that previously took the lives of many children. It is heartbreaking that Hayes was not able to benefit from early detection of SCID. However, because of his mother’s valiant efforts, we will now be able to give other children in South Carolina with SCID a chance to survive, said Streck.
The Kalergis family is relieved others won’t have to suffer the heartache they endured because this test will be available for their babies. Eight months ago, they were blessed with a daughter, Porter, who carries one recessive gene, but was not born with Ommen’s Syndrome.
As Charleston’s 2014 March of Dimes Ambassador, Rannigan–Kalergis will share her story in an effort to help the March of Dimes raise awareness of the importance of screening.
“The fact that Hayes’ story was special enough to share with the community in an effort to bring awareness to the importance of the newborn screening process, means the world to me. While this is two years late for Hayes, we just won’t know how many lives this test screen will save and improve,” she said.
“I knew of the March of Dimes’ work with premature babies,” she continued, “but I had no idea the many other areas they assist in such as pediatric health and pediatric care and just how much they have accomplished. They were firmly behind the screening movement and I look forward to educating the community about its importance.”
During the March for Babies kick off at MUSC, participants will have the opportunity to meet the Kalergis family, sign up to be team captains, pick up fundraising materials and learn more about the 2014 campaign.
A great deal of excitement surrounds the annual event. “We are grateful to have the Kalergis family serving as this year’s ambassadors and as always, we look forward to working with MUSC. We are very excited that Dr. Pat Cawley will serve as the 2015 chair,” Repik said.