The Joint Commission on Infant Hearing has set guidelines requiring that newborns be screened by one month, diagnosed by 3 months, and receive intervention by 6 months. With all the new data about the earlier the better, the Joint Commission is considering moving from the 1-3-6 model to a 1-2-3 model. I am certainly a fan of moving to the 1-2-3 model but we have an even more significant problem. What do we do about kids who are lost to follow-up? Hospitals may successfully screen babies before they leave the hospital but how do we get the babies to future appointments?

 

 

What happens after screening?

When babies are referred after screening, the parents are often giving a piece of paper with contact information about who to call to schedule a follow-up appointment. If the birthing hospital has an audiology program the parents are usually given that phone number. But if the family lives far away coming back to the birthing hospital may be difficult. Parents may not know how to find a facility close to them.

 

How are we doing?

First of all, it is important to remember that hearing loss is a neurological emergency. Auditory brain development requires early auditory exposure. Christine Yoshinaga-Itano published an article in Pediatrics last week which demonstrated the importance of early management. While we seem to be successfully screening newborns, we are not always successfully getting them to follow-up. The study reported that, even after 17 years of screening babies, a significant number of infants are not meeting the 1-3-6 guidelines. While 98% of infants are screened, the study reports that nearly half of the babies are not getting follow-up on time. Problems with getting appointments, difficulty traveling to the appointments, getting time off from work, and, in some cases, paying for hearing aids. Even when states have programs to pay for hearing aids, it can take months for the hearing aids to be approved and delivered. For families who are not English language speakers, the problem can be more difficult.

The study followed 448 children in 12 states and measured the number of words the children had in either spoken language or sign language and compared them to their hearing peers. On average, hearing children have about 600 words in their vocabulary by 30 months. Children who meet this goal would have a vocabulary quotient (VQ) of 100. The children with hearing loss who met the 1-3-6 guidelines and had no additional disabilities had a VQ of 82 on average, low normal. Children who did not meet the 1-3-6 guidelines scored below 70, ranking in the lowest 10th percentile. Again, early identification makes a difference.

 

What is the role of the pediatrician?

Pediatricians need to be very proactive here and many are not. They need to check with parents about whether they have followed up and help them find facilities that are convenient. Pediatricians know that a certain percent of babies who fail screening will pass the diagnostic test so they may not feel it is important to push families to get tested. Considering the low incidence of hearing loss, pediatricians may not have a lot of experience with children with hearing loss and may not understand that hearing loss is a neurological emergency and that services need to be obtained quickly. If we do not educate pediatricians, the battle can be lost.

 

What is the role of audiology programs?

Audiology programs have a significant responsibility in helping solve the delay. Having run audiology programs for more than 40 years I understand the need to keep appointments filled to satisfy administrators. Audiologists need to educate the administrators to help them understand the life long effect that delayed management can have on children with hearing loss.

Depending on the demand in a particular clinic, a certain number of appointments need to be set aside each week so that babies can be scheduled quickly when a parent calls and says “my baby failed newborn hearing screening.” If the appointment is not filled the week before, other patients can be put into the slot.

The problem of getting hearing aids quickly is another issue. For families who can afford to pay for hearing aids, they can be ordered quickly. For families who need to go through complex state programs like Medicaid, which can take several months, loaner aids need to be available. Some hearing aid companies are willing to participate in this kind of a program, especially if they can expect to sell hearing aids. Manufacturers may be willing to donate hearing aid models they are eliminating. While not ideal, centers can ask people getting new hearing aids to donate their used hearing aids for a children’s hearing program. I spent a great deal of my time begging for hearing aids when I was a clinic director. It was a job I hated but, even more, I hated not have hearing aids for babies.

 

Therapy

Audiologists need to be sure that they know where and how to refer for therapy once technology is fit. Hearing aids, as we know, do not solve the problem. For families who are choosing listening and spoken language, therapy is essential. We also know that not every SLP is an expert in managing children with hearing loss. Audiologists need to know where the listening and spoken language specialists are in their area, and more SLP’s need to become experts in listening and spoken language.

 

What is the role of policy makers?

It is very good that policy makers have passed newborn hearing screening legislation all over the US, but they have not managed the rest of the program. They have not thought about what happens if a child fails the screening. Why this may not be the best time to try and add things to health insurance, we need to insist that health insurance cover hearing aids, at least for children. And we need to push the policy makers in our states to make it a funded mandate.

 

Okay everyone – get to work!!!

Dr Dana Suskind, a pediatric otolaryngologist at the University of Chicago Medical School wrote the wonderful book Thirty Million Words – Building a Child’s Brain, She is Director of the 30 million words initiative at the University of Chicago Medical School – a program to build language and build the brains of children who are growing up in poverty who have families, who, because they are overwhelmed with survival have not been able to provide children with sufficient language development to help build the brain. It was the difference in the success rates of children who received cochlear implants who lived in language rich homes and those who did not that inspired her to write the book and to develop the program.

 

What happens if babies do not receive sufficient language stimulation?

Dana points out that children’s future and the future of the country depends on having children who develop good language skills. Children who are delayed in language will find themselves less ready to start kindergarten, and less ready to learn to read.

 

Language is a very post powerful force – it is the heart of the most central component of developing the brain. Children who live in poverty often do not get a fair start. It is not because they are not as smart or because their parents are not smart or do not love them. It is because their families are often overwhelmed with the basics of life – managing to have a roof cover their heads and finding enough to eat. And, since we know that poverty breads poverty, we know they these parents have often not had the opportunity to learn how to be good language models from their parents.

 

The Hart and Risley data has shown that children living in poverty heard 30 million few words the their more affluent peers by age three. As a result they were not in a position to compete with their peers who had had better language exposure which resulted in better brain development.

 

We know that the first three years are the most critical time for language development. During this time, the brain is most plastic and open. The child brain develops 70,000 new neural connections every hour. 80-85% of brain development happens in the first 3 years. As children get a little older, the neural connections in the parts of the brain that have not been used well start to be pruned away. If we don’t stimulate the brain early, we don’t get a do-over. Science strongly indicates that reaching that potential depends on early years parent talk and exposure to language.

 

Parent talk impacts every aspect of a child’s abilities – language, socio emotional development, literacy, math and spatial skills, executive function, self regulation and behavior.

 

Can we fix it?

The 30 Million Words Project is developing a home visiting program designed to help families who live in poverty, to develop the skills that can allow their children to begin at the same starting line has children who have had more opportunity for language exposure. The things this program suggests are very applicable to families of children with hearing loss who may also be deprived of language exposure.

 

Parents must believe that they can make a difference in their child’s development. They need to understand that words are what grow your babies brain and that they are the architect of their babies brain. They need to understand the importance of the parent-child bond in child development and in building intelligence. If parents do not believe that they can make a difference then we can not expedt parents to do the necessary work. As any of us who have been parents of babies know, parenting is hard work.

 

Parents need to understand what makes a rich language environment. The 30 million word project talks about the three T’s – Tune in, talk more, take turns.

  • Talk more – encourages parents to describe the world the child is in, (“I’m putting your foot into your pants”), share your thoughts.
  • Tune in – Pay attention to what your child is communicating. For infants look for eye gaze and gurgling sounds and respond to them. As children get older, respond to even minimal language. “Do you want juice? I can get you juice. Should we have apple juice? Let’s look in the refridgerator.”
  • Take turns – Have a conversation. Even before a child speaks, you speak, and wait for them to gurgle and then confirm that they were talking and you say more. Let it be a conversation.

All language exposure should include a rich vocabulary with complex sentences.

 

The additional components of the program include helping families who are trained in the Three T’s spread the word to other parents – teach other parents what they have learned. Parents are encouraged to be positive, and reinforce good behavior, to share books with the child to build literacy, and to share an oral story with the child. Parents are encouraged to teach about numbers and shapes around the house. And critical – reduce screen time. It does not build language.

 

What about children with hearing loss?

In many ways, children with hearing loss are in a different kind of poverty if they do not receive good technology and their families do not learn to talk, talk, talk. Parents are the key to developing children. Families of children with hearing loss who come from poverty are in a very difficult situation. If these kids are going to succeed, these families need all the same kinds of instruction that Dana is talking about in building parents skills to provide good language stimulation to build the brain. We can and we must do it for all children. If we do, every child can reach her potential and live stable fulfilled lives.