Newborn Screening & Genetic Services

Congratulations on the birth of your baby! Whether mild or profound, in one ear or two, the unexpected diagnosis of hearing loss in an infant or toddler may be overwhelming for a parent. While hearing loss is the most common health condition screened for in the newborn period, the majority of children diagnosed with this condition are born to parents who have normal hearing.

Regardless if a parent is hearing, Deaf or hard of hearing, they may be faced with many questions about your child’s hearing loss and what to do next. Remember that parenting is always a journey taken one step at a time. You already know how to love, cuddle and comfort your baby. What may be new for you is learning about hearing loss. Children with hearing loss communicate in many ways, but just like hearing children, it is best if they start when they are very young. Children whose hearing loss is identified early that receive early intervention services often learn language at the same pace as hearing children.

With timely and appropriate support services, children with hearing loss can certainly excel in school and can become anything they want to be when they grow up.  Much of your child’s success in life will depend on your love, support and ongoing commitment to working side by side with them and their hearing health care team, their early interventionist, school personnel and Deaf and hard of hearing role models. There are lots of people and  organizations ready to help.  The following links contain information that you may find helpful.

Your child’s audiologist is the professional who will test your child’s hearing, describe the test results and give you guidance on the next steps in your journey.  Your audiologist will monitor your child's hearing status on a regular basis and will work with you and a team of professionals to provide your child with the services they need.

• You can find a list of audiologists in New Jersey Pediatric Hearing Health Care Directory.
• This brochure will provide you with a list of questions to ask your audiologist.

Your child’s primary care provider is the medical professional to oversee your child’s overall health and development and direct you to other medical specialists who may need to evaluate your child.

• This brochure will provide you with a list of questions to ask your primary care provider.

All children who are diagnosed with a hearing loss need to be referred to an ‘otolaryngologist’ (an ear, nose and throat (ENT) doctor) to investigate the cause of the hearing loss and answer any of your questions about any possible medical treatments.

In New Jersey, if you decide that you would like to get a hearing aid(s) for your child, the ENT doctor will need to sign a medical clearance form to indicate that they have completed an examination of the ear and agree that amplification is appropriate.

• This brochure will provide you with a list of questions to ask your ENT.

A hearing aid dispenser is a licensed professional who provides hearing aids to children and adults. In New Jersey, your audiologist may also have a hearing aid dispenser license and can fit your child with hearing aids. There are some occasions where your audiologist may need to refer your child to a hearing aid dispenser for hearing aid related services.

Some insurance companies will cover the cost of a hearing aid(s), but if they don't, your county’s Special Child Health Services Case Management Unit may be able to help.

The NJEIS is a program for children from birth to 3 years of age who have hearing loss or other medical conditions that could cause a developmental delay.   In New Jersey, children with a hearing loss in one or both ears are eligible to receive these services.  Call the Statewide Toll Free Referral Number at 888-653-4463 for more information.

Let NJEIS know that your child has a hearing loss and they will connect you to a “Hearing Consultant” to learn more about your child’s hearing loss; communication choices; benefits of early intervention for children with hearing loss; how to advocate for your child and offer you the opportunity to meet other families of children with hearing loss and/or successful adults who grew up with a hearing loss.

• This brochure will provide you with a list of questions to ask your EI provider. 
• This brochure has more information about EI services for children with hearing loss.

The Speech-Language Pathologist is a professional (sometimes called a ‘speech therapist’) who evaluates and treats children and adults who have speech and/or language challenges.

• This brochure will provide you with a list of questions to ask your speech-language pathologist.

The Ophthalmologist is a doctor who specializes in the examination and medical treatment of the eyes. Since children with a hearing loss may rely more on visual cues to learn language, every child with a hearing loss should have at least one eye examination by an ophthalmologist who is experienced with evaluating infants and children.

The Genetics Team is made up of a clinical geneticist and a genetic counselor. A geneticist is a doctor who specializes in diagnosing and caring for children and adults with a genetic condition. A genetic counselor is a health care professional who talks with people about the risk for genetic conditions and provides counseling and support.  For infants with confirmed hearing loss, a genetics consultation should be offered to families. 

• This brochure will provide you with a list of questions to ask your genetics provider.
• This brochure will provide additional information about genetics.

New Jersey Statewide Parent to Parent

This program gives families the skills and support they need to help their children with special needs reach their full potential and to help them feel less isolated and more confident about themselves. Parent to Parent offers one-to-one matches of families who have similar needs and experiences and provide emotional support for parents and information resources for the child and family. 800-654-SPAN (7726).

Hands and Voices

Hands and Voices is a nationwide organization dedicated to supporting families and their children who are Deaf or hard of hearing. This is a parent-driven, parent/professional collaborative group that is unbiased towards communication modes and methods. Hands and Voices of New Jersey can be reached at 609-789-0677.

Deaf and hard of hearing adult Role Models and Mentors

Both Deaf and hard of hearing adults and children can play a significant part in the journey of a family with a child with hearing loss by serving as mentors and role models. Mentors have first-hand experience in negotiating their way in a world where having a hearing loss is a minority. In addition, mentors may have experience with raising children with hearing loss and can provide families with a full range of information about communication options, assistive technology and resources available in the community.