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
All parents hope that their babies will be healthy. Some babies who look perfectly healthy at birth may have problems that will affect how they grow and develop. Newborn screening tests babies for many medical conditions that are not obvious at birth, but need medical treatment. By finding the medical problem soon after birth, babies quickly receive the treatment they need. Newborn screening improves the health and development of babies.
Every year in Ohio, more than 500 newborns needing medical care are identified by newborn screening. Nearly 200 infants are identified as deaf or with hearing loss, an additional 80 infants are diagnosed with serious heart diseases, and about 300 more infants are identified with serious medical conditions that can be found by testing the baby’s blood.
Babies born in Ohio have three different newborn screening tests done shortly after birth. A hearing screen to check to for hearing loss and a pulse oximetry screen to check for seven critical heart defects are usually done at the birth hospital the day after a baby is born. These screenings are non-invasive and do not hurt the newborn. Parents are told the results of the hearing and heart screens after the testing is completed and the baby’s primary healthcare provider is also informed. If the baby is not born in a hospital, the midwife, doctor or local health department will help arrange the hearing and pulse oximetry screening. If the results for either the hearing screening or pulse oximetry screening are abnormal, the baby will be referred for additional testing. It is important that babies who need additional testing get the testing done right away.
A blood test to screen for many metabolic, endocrine, and genetic conditions is also done on a few drops of blood taken from the baby’s heel. This blood sample is usually collected at least 24 and 48 hours after birth. (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 blood sample is sent to Ohio’s newborn screening lab for testing. The results of the blood test are sent to the baby’s doctor within 10 days of the lab receiving the blood sample. The results of the baby’s newborn screening testing are sent to the birth hospital and to the baby’s health professional. Parents should ask about these results during the baby’s first health checkup.
If your baby’s blood spot screening contains results that are not normal, the baby’s healthcare provider will arrange for further testing right away. In some cases, the baby will be referred to a specialist. It is important to identify babies that have these conditions quickly, so they can start medical treatments that will improve their health and development as soon as possible so that the baby can begin treatment.
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?
In Ohio hospitals and free standing birthing centers purchase blood spot screening kits for $74.61 per kit. Hospitals are charged the same amount regardless of whether the kit is for an initial or repeat screen. In addition to testing, the fee covers administration, clinical follow-up services, and metabolic formula 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 network of comprehensive genetic centers throughout the state that provide 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 Bureau of Maternal, Child and Family Health (BMCFH) . In addition to the Genetics Services Program, the bureau also includes the Sickle Cell Services Program, and the Ohio Connections for Children with Special Needs (Ohio's birth defects information system). To contact one of these programs, located at 246 North High Street Columbus, Ohio 43215, call (614) 995-5333 or email at BCMH.OCCSN@odh.ohio.gov.
Some children with conditions detected by newborn bloodspot screening will have very specialized nutritional needs. The ODH provides metabolic formula to individuals born with metabolic disorders such as phenylketonuria (PKU) and homocystinuria. 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 Metabolic Formula Program 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. 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, hearing aid assistance or the Children with Medical Handicaps Program 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.