My daughter is alive because of newborn screening. It means everything to me. I have my daughter because of it.
Shauna B. ,
Connecticut Parent
What Is the Connecticut Newborn Screening Network?
A simple blood test can detect more than 60 rare genetic conditions in newborns. If left untreated, these disorders can lead to illness, physical disability, developmental delay, or even death. Nurses perform a heel stick on every newborn in Connecticut to collect a few drops of blood and send those samples to a state laborary. In any given year, about 1 percent of the samples are flagged as being out of the normal range.
The Connecticut Newborn Screening Network responds to all reports of infants who have a flagged newborn screen. The Network is staffed by board-certified physicians, genetic counselors, registered nurses, and a nurse analyst. Follow-up services are provided at Connecticut Children’s Specialty Care in Hartford, Farmington, Danbury or Shelton, or at Yale New Haven Hospital.
Our Services
Since its launch in May 2018, the Network has revolutionized newborn screening in Connecticut by building a system that reduces the time families wait for a diagnosis, provides a vital link between families and providers once a diagnosis takes place, and ensures long-term follow up care so children have every opportunity to thrive.
By identifying these disorders early, interventions such as medications, or changes in diet can help prevent most health problems caused by the disorders identified on the newborn screening panel.
In coordination with the infant’s primary care provider or hospital-based medical provider, the Network will begin the diagnostic work-up, and provide support to both the family and health care team. If an infant confirms positive for a disorder, the Network will coordinate treatment and long-term follow-up care for the condition identified, working with primary care physicians, hospitals and specialists statewide.
The Network has established a registry for measuring, tracking, and reporting of disorder specific outcomes from birth to age 21.
Upon receipt of an out of range result, a Network Coordinator will:
Contact the infant’s primary care physician or hospital-based medical provider to obtain some brief information about the baby and to discuss next steps.
Consult with the appropriate specialist, place follow up lab orders or make recommendations for lab orders (when appropriate) and/or schedule an appointment if necessary.
Notify pediatric practices of recommended follow-up.
If treatment is needed, the family will be referred to a specialist in genetics, endocrinology, hematology or immunology. For those children who are diagnosed, the Network will continue to be a part of the child’s health care team and will track long-term health and developmental outcomes.
Read How Newborn Screening Saved Lincoln's Life!
Kirsten and Elijah's joy over the birth of their son, Lincoln, turned to concern when his newborn screening revealed a potential case of Maple Syrup Urine Disease (MSUD). Early detection through Connecticut's Newborn Screening Network allowed for prompt treatment, including a specialized diet and ongoing care at Connecticut Children's, preventing serious complications. Today, Lincoln is thriving, and his parents couldn’t be more grateful for the quick action that gave him a healthy start.
In August 2021, Shauna and Tim Barrett discovered their newborn, Aria, had a life-threatening condition thanks to newborn screening. The early diagnosis led to a life-saving bone marrow transplant from her brother Bodhi. Shauna underscores the importance of newborn screening: “My daughter is alive because of it.”
Baby’s First Test, the country’s newborn screening education center, selected the Network as one of two inaugural recipients of the Generating Real Action by Cultivating Engagement (GRACE) Award, which recognizes programs that engage families in newborn screening to meet their needs and incorporate lessons learned into future outreach. Additionally, the Association of Maternal & Child Health Programs recognized the Network as a Cutting Edge Practice.
