What Conditions are Screened For in Delaware?
Amino Acid Disorders
- State preferred name: congenital hypothyroidism
Fatty Acid Oxidation Disorders
- State preferred name: carnitine uptake deficiency
- State preferred name: long chain hydroxy acyl-CoA dehydrogenase deficiency
Organic Acid Conditions
- State preferred name: 2-methylbutyryl-CoA dehydrogenase deficiency
- State preferred name: 3-hydroxy-3-methylglutaryl-CoA lyase deficiency
- State preferred name: multiple carboxylase deficiency
- State preferred name: isobutyryl-CoA dehydrogenase deficiency
- State preferred name: methylmalonic acidemia
- State preferred name: PA
About Newborn Screening in Delaware
The Delaware Newborn Screening Program (NSP) is a program intended to identify newborn babies with one of a number of rare conditions that are almost impossible to detect without this process. Babies with these conditions may appear healthy at birth. Most of these conditions, if not identified and treated soon after birth, can result in developmental delay, substantial cognitive disability, serious medical problems, or even death. Fortunately, when caught early, the available treatments will greatly increase your child’s chances of living a healthy, happy life.
Your child’s blood will be drawn and sent to a lab shortly after birth. If the screening test comes back abnormal, your doctor will likely contact you with follow-up instructions. While this does not mean your child definitely has the condition, it is very important to follow the instructions as soon as possible, since starting treatment is vital to your child’s health. Because timing is so important, make sure your doctor has your current phone number and address when your family leaves the hospital so he or she can contact you if necessary.
In addition to saving lives, newborn screening also saves millions of dollars in treatment, home, and institutional cost. For every $1 spent on newborn screening, it is estimated that between $2 and $4 are saved. The savings are primarily in reduced medical costs and in the reduced requirement for special education for children who otherwise would have been disabled.
How is Newborn Screening Paid for in Delaware?
The newborn screen fee is $135, but includes a repeat screen. The fee is paid by the hospital of birth or birthing center. No newborn is denied screening because of the inability to pay.
Parents of a newborn may be excused from payment of fees for newborn screening if the parents are unable to pay for the test. To request a statement of fee exemption call 302-744-4544 or call toll free 1-800-262-3030.
In the event a fee exemption is claimed, the person otherwise responsible for submitting the specimen for testing shall be responsible for submitting a completed fee exemption form to the Delaware Newborn Screening Program Office, signed by the infant's parents, using the following language:
DELAWARE NEWBORN SCREENING PROGRAM
STATEMENT OF FEE EXEMPTION
The undersigned states that the parents of _____(print name)__________ , ______(Date of Birth)______ are unable to pay the fee for newborn screening testing for metabolic and hemoglobin disorders because of lack of funds.
Signature of Parent or Guardian
Received in Newborn Screening Program Office: ____________________________
Policies and Resources
Delaware regulations require all newborns to participate in the state newborn screening program unless a parent or guardian objects on religious grounds. Families who decline testing must file an affidavit swearing their religious beliefs. The person who administers screening must provide an informational pamphlet developed by the department. The department must record demographic information on newborns screened, for surveillance and monitoring. However, a parent or guardian also may refuse to disclose personal information concerning an infant's birth defect on religious grounds.
Support for families:
One of the concerns some families may have when they first find out that their child has a metabolic condition detected by newborn screening is the increased cost of health care. Fortunately, Delaware has various programs and laws that aim to help reduce the cost of providing the best care possible for your child.
If you have private health insurance, your insurer is required by law to provide coverage for medical formulas and foods as well as low protein-modified formulas, all of which are used to treat many metabolic conditions. As long as they are prescribed as medically-necessary for the treatment of the metabolic condition and administered under the supervision of a physician, they will be covered.
For those without private insurance, the Delaware Healthy Children Program is a low-cost health insurance program for Delaware's uninsured children from newborn through 19 years old. The Delaware Healthy Children Program features the same high-quality coverage you would receive with some of the best private insurance plans. The child must come from families whose income must be no more than 200% of the Federal Poverty level. For more information about all of the available services for uninsured Delawareans, download the Healthcare Resource Guide.
Delaware citizens also have access to state programs to help them navigate the available services. Kids Kare is a Delaware program that provides education and support to families with children who have medical needs that routinely require medications, have developmental needs, or even when mothers and fathers may just need extra help to provide the special care that is needed for their child. To find out if this program can help your child, contact the Bureau of Maternal and Child Health at (302) 744-4551.
Also, Delaware’s Office of Children with Special Health Care Needs provides statewide leadership through partnerships with key stakeholders including families, children and youth with special health care needs (CYSHCN), as well as state and community organizations to improve the well being of CYSHCN. For more information about this program, contact State Health and Social Services, Division of Public Health located at 417 Federal Street in Dover, DE 19901. They can be reached via phone at (302) 744-4551 or firstname.lastname@example.org or email@example.com. More information can be found on the Children with Special Health Care Needs portion of the Delaware State website.
For more information about all of Delaware’s human services, please call the Delaware Helpline at 2-1-1 if you are in state and (800) 560-3372 for out-of-state. You may call between 8:00 A.M to 8:00 P.M. on weekdays for assistance.
Storage and Use of Dried Blood Spots:
Blood spot specimens are kept for three years in Delaware. After screening is complete, only the blood spot portion of the card will be stored for up to three years in a controlled environment at the Delaware Public Health Laboratory. These stored specimens may be used for improving tests to screen for more disorders. Specimens will not be used for research without written consent from the parent or guardian.
All information relating to the newborn screening program is considered confidential. Information may only be disclosed to third parties in “summary form,” which will not identify an individual directly, as well as in statistical or anonymous form. The department may release data for approved research projects. If information is released for approved research projects, the party requesting the information must submit a proposal to the Newborn Screening Program and the Institutional Review Board of the Division of Public Health, both of which will require patient privacy and protection to be a primary focus.
The birth defects registry statute protects the confidentiality of information related to the diagnosis or treatment of a biochemical disorder reported to the department and prohibits the disclosure of individually-identifiable information. The Department of Health Services is permitted to share personal information in the registry with authorized agencies.