- Associated Press - Sunday, December 14, 2014

SALISBURY, Mass. (AP) - The yellow clapboards and bright orange door of Laurel and Jerome Kapferer’s Salisbury home are bright spots on an otherwise understated suburban street.

Inside the Kapferer home, nothing is out of place or randomly left to chance, including the parenting of their toddler son, Blake. When a visitor stops by on a Sunday afternoon, even Blake is invited to participate in the discussion. His high chair is ceremoniously placed at the head of the dining room table, and he is seated by “Poppa.” Blake is all smiles as he gnaws on an apple and eventually succumbs to a late-afternoon nap.

Family life is tranquil now, and the Kapferers have moved on in some ways from the tragedy that visited them after the birth of their first son, Grayson. But they are choosing to speak out about the disease that claimed Grayson’s life to prevent others from the experiencing the same loss.

Grayson was born prematurely and died of necrotizing enterocolitis on Valentine’s Day 2012.

NEC is a disorder of the intestinal tract that affects infants born early with very low birth weights. It is related to underdevelopment of the intestinal tract and other factors that are as yet not well understood. It strikes about 10 percent of preemies and can be deadly up to 50 percent of the time.



The Kapferers hope to raise awareness of the disorder through the sharing of their experience in video and on social media.

NEC can create life-threatening bloating, gas, perforation of the intestines and bacterial infections leading to sepsis and death of the intestines. It can sometimes be successfully treated through antibiotics and/or surgery if caught early enough. The leading cause of death from gastrointestinal causes in premature infants, it was responsible for 386 deaths in the United States in 2011.

Laurel Kapferer hopes to educate others about NEC’s signs and symptoms and to secure funding to research the underlying contributors through Team Grayson, a nonprofit organization that she and Jerome have created. She believes that standardizing of hospital protocols for all preemies might prevent the disease.

“Breast milk can reduce the incidence of NEC by 80 percent,” she said. “Probiotics may help; not using formula and fortifiers may also help.”

She hopes to eventually aggregate NEC best treatment practices into standardized protocols. She is also hopeful that efforts by Sigma-Tau Pharmaceuticals will be successful in developing a vaccine.

The Kapferers lost Grayson at 7 days old after he was born at 34 weeks through emergency cesarean section at Boston’s Beth Israel Deaconess Medical Center. Although he was well-cared-for by leading professionals in the neonatal intensive care unit, there was no treatment strong enough to save his life.

This month, in concert with the national Prematurity Awareness Month sponsored by the March of Dimes, the Kapferers have released a mini-documentary about Grayson’s birth. It has received nearly 13,000 views so far.

“Our supporters have raised thousands of dollars for Boston Children’s Hospital and Action Medical Research in the U.K., as well as money for the March of Dimes,” Laurel Kapferer said.

Despite the gravity of the subject, she emphasizes that the video and their nonprofit are about love and hope, not despair.

“When this happens, you can go down a very dark road or you can be grateful,” she said. “We are grateful that we got to meet our child. We got to hold him at the end. You have to make a conscious decision as to which road you will go down.”

There is also a national push for NEC awareness. In June, several U.S. senators petitioned the administrators of the Centers for Medicare & Medicaid Services to pay more attention to the disease.

“It is our understanding that medical interventions exist which could significantly reduce the risk of infants developing NEC,” they wrote in a letter expressing their hope to bring attention to the matter and “improve health outcomes of our most vulnerable children.”

In the meantime, the Kapferers continue to honor the memory of their child. A Team Grayson Facebook post on Feb. 7 “marks what would have been the second birthday of our little man Grayson.”

“We still miss him every day,” the entry states. “He has empowered us to do good. We love you and miss you ‘wiggle worm.’ Keep watching over us and your little brother.”

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For more information about Team Grayson, visit www.teamgrayson.org or www.facebook.com/teamgraysonusa.

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