Longtime New England Newborn Screening Program supervisor ending one career, beginning another

August 06, 2015

It was Denise Daley’s last weekend working for UMass Medical School’s New England Newborn Screening Program and an unexpected, profoundly abnormal blood test result showed a baby to be at significant risk for congenital hypothyroidism.

A normal thyroid-stimulating hormone (TSH) value is less than 20 and this baby’s specimen had a value around 700.

“I retested the specimen to confirm the result, our follow-up person made the Sunday contact with the pediatrician, and the baby was started on treatment and its way to a healthy life,” said Daley, BS, MPH, MAM, who will retire Aug. 7 after 33 years working in the screening program’s endocrine laboratory.

“I feel like Ted Williams, when he hit a home run his last time at bat,” Daley said of Aug. 2, her last Sunday on the job and coincidentally her birthday. “My last weekend, and another baby saved. I do love this job and I will miss it.”

Helping to detect conditions that are potentially life-threatening or that could slow development in newborns has been gratifying and challenging for Daley. As she retires from her position as endocrine laboratory supervisor, she looks forward to some new opportunities, including a path she’s chosen to help others through the Catholic Church.

“The work in Newborn Screening is wonderful; we are set up to detect disorders lying in wait in babies who otherwise appear to be perfectly healthy, so these babies can be diagnosed early and treated to prevent bad outcomes,” Daley said.

The program’s endocrine laboratory screens for two disorders: congenital adrenal hyperplasia, which can be life-threatening in a matter of days after birth, and congenital hypothyroidism, which can cause lethargy, slow growth and learning delays in infants. Both disorders are easily treatable. The New England Newborn Screening Program in Jamaica Plain tests blood samples from newborns for a total of 30 treatable disorders.

In the summer of 2005, Daley had purchased a four-bedroom house in which she intended to live with her only child, her daughter Kim, who had learning disabilities, and also provide foster care to two adults with special needs. Five months after moving in, Daley’s personal life changed abruptly when her 21-year-old daughter unexpectedly died in her sleep. As Daley said: “I had no chance to say good-bye. She was there, and then she was gone.”  To honor her daughter’s memory, Daley refinanced the house, taking out money to donate to the Step One Early Intervention Program run by South Shore Mental Health. Step One has dedicated a beautiful infant and toddler activity room to her daughter, the Kimberly Ann Rojas Jumpin’ and Jammin’ Room.

Also, Daley’s daughter was a tissue donor and this prompted Daley to begin volunteering with the New England Organ Bank, where she heard about the paired kidney exchange program, and was inspired to become a living donor herself.

Daley was matched, and donated a kidney in December 2006 to a young patient who had been on dialysis for 13 years.

“It’s been eight years since the kidney transplant and it makes me very happy to hear that my recipient is still going strong,” Daley said.

Four years ago, Daley’s life took another turn. She was a volunteer catechist at her parish and when her pastor asked her to head the religious education program, she decided she needed to learn more about her religion. Daley recently earned a Master of Arts in Ministry degree from the Theological Institute for the New Evangelization at St. John’s Seminary in Boston.

Daley also has been trained to teach English and spent six weeks during the summer of 2014 teaching English in Vietnam, the country where her husband, Newborn Screening employee Anthony Truong, was born.

“The Newborn Screening Program has been a wonderful place to work,” Daley said. “I have had the great privilege of shepherding the endocrine lab through many positive changes in procedures and technologies throughout the years. My co-workers do very important work and care deeply about the good work they do. While I am looking forward to a future in ministry, I will miss being a part of this great team of caring and dedicated people.”

UMass Medical School’s Commonwealth Medicine division, on behalf of the Department of Public Health, has operated the Massachusetts newborn screening program since 1997. The lab performs metabolic and genetic screening for nearly every one of the approximately 75,000 babies born in Massachusetts annually. UMass Medical School’s New England Newborn Screening Program also runs newborn screening for Maine, New Hampshire, Rhode Island and Vermont.

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