In this Section:
What conditions are screened for in Ohio?
Amino Acid Disorders
- State preferred name: PKU variant
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Ohio
The Newborn Screening Program for genetic, endocrine and metabolic disorders identifies newborn babies who may be at risk for one of several serious conditions. If left untreated, these conditions can lead to slow growth, blindness, intellectual disability, and possibly death. Finding these problems early and providing appropriate treatment may prevent many serious complications from developing later.
Before the baby leaves the hospital, a few drops of blood will be taken from the baby’s heel. The blood sample is sent to Ohio’s newborn screening lab. Newborn screening needs to be done at least 24 hours after birth and before the baby is 5 days of age. If the baby is not born in a hospital, the midwife, doctor or local health department will help to collect the blood sample before the baby reaches 5 days of age. The only reason for refusal recognized by the state is a religious objection. The baby will need to be retested if the baby leaves the hospital before 24 hours or if there is a problem with the blood sample. Parents should arrange to have the sample collected and sent without delay.
In summer 2009, the NBS program expanded to 35 disorders. The latest expansion includes screening for Tyrosinemia. Ohio screens for 36 disorders and the most recently added disorder was Severe Combined Immunodeficiency (SCID) in 2013.
The results of the baby’s newborn screening testing will be sent to the birth hospital and to the baby’s health professional. Parents are advised to make sure both the birth hospital and health professional have the correct address and phone number to be reached if needed. Parents should ask about these results during the baby’s first health checkup.
An abnormal result on the newborn screen does not always mean the baby has a disorder. The baby will require further testing, ordered by the primary care provider, to find out if the baby does have one of the disorders. These tests should be done right away. Should the disease be confirmed, there are treatment options available. Treatment may consist of special diet, antibiotics, other medications, education or combinations of the above.
The overall goal of the NBS program is to improve the quality of life of the baby through early diagnosis and treatment. Time is a very important element in this process. Cooperation and timely action by the parents and the medical care providers will help all babies get a healthy start at life.
Families can contact their specific hospital’s newborn screening coordinator by locating their phone number in this directory.
How is Newborn Screening Paid for in Ohio?
The NBS Fee is $63.61 per child. In addition to testing, the fee covers administration, follow-up services, and treatment for certain conditions.
Policies and Resources
All newborns must participate in newborn screening unless parents object on religious grounds. The hospital or birthing center must provide parents with written notice of screening, which includes a description of the newborn screening program and the opportunity to receive additional optional tests. If parents decline screening, then the hospital or birthing center must send a written refusal of testing to the Ohio Department of Health. The refusal form must be completed by the objecting parents.
Support for families:
One of the concerns some families may have when they find out their child has a condition detected during the newborn screening process is the increased cost of health care. Fortunately, Ohio has many programs in place to help families afford the care their child needs.
The Ohio Department of Health (ODH) Genetics Services Program funds a regional network of genetic centers that provides comprehensive care and services to people affected with, or at risk for genetic conditions. The purpose of the program is to ensure availability of quality, comprehensive genetic services in Ohio. Genetic services include, but are not limited to genetic counseling, education, diagnosis and treatment for all genetic conditions and congenital abnormalities. The ODH Genetic Services Program is housed within the Genetics Section located in the Bureau for Children with Medical Handicaps (BCMH). In addition to the Genetics Services Program, the section includes the Sickle Cell Services Program, the Metabolic Formula Program and the Ohio Connections for Children with Special Needs (Ohio's birth defects information system). To contact the program, located at 246 North High Street Columbus, Ohio 43215, call (614) 466-1549 or email at BCMH@odh.ohio.gov.
Some children with conditions detected by newborn screening will have very specialized nutritional needs. The ODH also provides metabolic formula to individuals born with phenylketonuria (PKU) and homocystinuria. Beginning in January of 2008, a pilot program was implemented to cover special formulas for newborns with any inborn error of metabolism identified through newborn screening. Without these special formulas, individuals, especially infants and young children, may develop brain damage and intellectual disability. Every year in Ohio, 12-15 babies are born with PKU and one to two babies are born with homocystinuria. It is recommended that individuals with these diseases remain on formula for their lifetime. The ODH orders the specialized formula, which is shipped directly to the patients' homes. Formula is provided at no cost to the patient. Funds to support the program come from a portion of the newborn screening fee, the Bureau for Children with Medical Handicaps program and the Women, Infants and Children (WIC) program. Requirements for participation in the program include Ohio residency, application to third-party payment sources and being under the care of an approved Ohio metabolic center. To contact Ohio Department of Health’s Metabolic Formula Program located at 246 North High Street, Columbus, OH 43215, call (614) 466-0227 or e-mail CMH@odh.ohio.gov. Links to other Ohio programs and resources, such as those for cystic fibrosis or sickle cell anemia can be found on the Ohio Department of Health website.
Additionally, Ohio's Medicaid program provides a comprehensive package of services that includes preventive care for qualifying residents. Some services are limited by dollar amount, number of visits per year, or settings in which they can be provided. Ohio Medicaid’s services include Healthchek (EPSDT) program services, which provides screening & treatment services to children 21 and younger. For more information, visit the Ohio Medicaid website or call 1-800-324-8680.
Storage and Use of Dried Blood Spots:
After the newborn screening process has been completed, there will be some dried blood remaining, which is called “residual dried blood spots”. Ohio keeps all residual dried blood spots and demographic information for no less than two years from the date the public health laboratory receives the specimen. The laboratory will keep the results of the screening test as well as demographic and case management information electronically for no less than twenty-one years.