States Connecticut

Connecticut currently screens for 65 conditions. Each state runs its program differently, for more detailed information please visit their website at http://www.ct.gov/dph/cwp/view.asp?a=3122&q=387742&dphNav_GID=1601.

Download Brochure

Here is a brochure for the state of Connecticut. Brochure »

What Conditions are Screened For in Connecticut?

About Newborn Screening in Connecticut

Program Overview:

State law requires that all newborns undergo screening for select genetic and metabolic disorders.  The Connecticut Newborn Screening (CT NBS) Program works to make sure that every newborn, who is born or lives in Connecticut, has a valid newborn screening and that those infants with presumptive positive screening results are quickly referred to a specialty treatment center for further evaluation and treatment when needed.  These efforts help prevent unnecessary disability and premature death.

The CT NBS follow-up/tracking staff work with Connecticut birth hospitals, birthing centers and midwife groups to monitor births through the NBS database and make sure that the State Public Health Laboratory has received a satisfactory NBS blood-spot specimen for every newborn. Staff also work to identify babies who reside in CT, but are not in the NBS database (i.e., babies born out of state, adopted babies and babies born outside of the hospital—such as home births and other out-of-hospital births that are not attended by a licensed medical/midwife provider).  All NBS specimens are tested for 65 conditions.  The Connecticut newborn screening panel is based on recommendations set by the US Department of Health and Human Services (US DHHS) and includes testing for metabolic disorders such as amino acid, fatty acid oxidation and organic acid disorders, in addition to, endocrine, immune, hemoglobin and peroxisomal disorders.

Follow-up takes place on all abnormal NBS results and staff either ask for a specimen for repeat NBS analysis or refer the child to a specialist in genetics, endocrinology, hematology or immunology at one of three regional treatment centers. The treatment center specialists work with the hospital of birth, Primary Care Provider, Midwife and other health care providers to provide care that includes consultation, diagnostic testing, education, counselling and treatment when needed.  Short-term follow-up by the NBS program continues until the child receives a confirmed diagnosis or a condition is ruled out.

In addition to this work, CT NBS Program staff also collect and analyze data that are used for quality assurance activities, surveillance and advancing the science of NBS.

How is Newborn Screening Paid for in ­­Connecticut?

Hospital birthing centers are charged a $98 per initial newborn screening specimen.  There is no charge for repeat screening or for specimens collected outside of a hospital birthing center. 

Policies and Resources

Opt-Out:

If the parents or legal guardians of a newborn infant object to newborn screening as being in conflict with their religious tenets and practice, they must sign a waiver to opt-out of screening. The birth hospital or birth attendant will send this waiver form to the state laboratory, and a copy of it will also be maintained in the hospital records.

Support for families:

One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the possible increase in health care costs. Fortunately, Connecticut has laws and programs which have been put in place to make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.

If your child is covered by private insurance, individuals and group health insurance policies must cover prescribed amino acid modified preparations and low protein modified food products. While there may be a co-payment, deductible or other cost-sharing process, the life-saving formulas will be treated the same way as all other outpatient prescription drugs are treated under your plan.

If your child is not insured, the state of Connecticut allows the department to purchase a special infant formula, amino acid modified preparations, and low protein modified food products directly for those who need it.

Children & Youth with Special Health Care Needs (CYSHCN) is a state service available for those who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and require health and related services beyond that required for children in general, such as some who are identified through the newborn screening process. All families of eligible children and youth with special health care needs (CYSHCN), regardless of income, will receive a respectful working partnership with you and your child’s medical home; care coordination services and family support referrals. Uninsured or underinsured families, who fall within income guidelines, can also benefit from payment for limited services (i.e. durable medical equipment, prescriptions, and special nutritional formulas). For contact information, view the Connecticut Medical Home Initative PDF.

Also, Directions is a guide to help you plan and coordinate care for your child or adolescent with special health care needs. In Directions you will find ways to organize your child’s health information, information about caring for your child’s special needs, resources, and tips from other parents of children with special health care.

Storage and Use of Dried Blood Spots:

After your child has been screened for all conditions, a small amount of blood remains on the specimen card called a “residual dried blood spot”. This specimen is retained for a minimum of 2 years and records of the screening tests are kept at the State Laboratory for a minimum of 5 years before being destroyed.

To see a copy of the blood spot card used in Connecticut click here.

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Last Reviewed - 2/6/2018