Paige Stringer: If a newborn is diagnosed early of hearing loss they have the potential to live a normal life

B.Nyamdari

2018-09-14 08:20 GMT+8
Paige Stringer, founder of Global Foundation For Children With Hearing Loss foundation. Photo by D.Javkhlantugs

Global Foundation For Children With Hearing Loss foundation is located in USA which works on hearing loss issue of some developing countries. Paige Stringer is founder of this organization and her team and Rotary Club of Ulaanbaatar Peace Avenue has raised enough money to provide hearing screening equipment for the Mongolian seven public hospitals that work with babies and young children in Ulaanbaatar have the potential to screen newborns for hearing issues. 

To see this life-changing progress and know that we played a small part in their story is  amazing. This is, by far, the most satisfying work that I have ever done.

- Good afternoon? First of all, please introduce yourself for us and readers?
- Hello, my name is Paige Stringer. I am the Founder and Executive Director of the Global Foundation For Children With Hearing Loss. Our goal is to make a direct and lasting impact on children 0-6 years of age around the world who are deaf or hard of hearing by providing them access to the early identification, hearing technology, locally-based trained professionals, and resources they need to learn to listen and talk and achieve their full potential.  I started this international nonprofit organization in 2009 after working for about 12 years in the business sector and my background is marketing communications. 

- Why did you found this organization and what’s the main goal of this foundation? 
- I have had a severe to profound hearing loss my entire life. Testing newborns for hearing issues was not yet a standard of care in the United States at the time I was born.  My family moved to England from the United States shortly after my birth.  A public health nurse making the rounds to the homes of young infants checked my hearing. When I did not immediately react to the sounds she was making on this initial visit, or on a subsequent one, my family was referred to a doctor for more formal testing. These doctors confirmed my hearing loss when I was eleven months old. I was fit with hearing aids and immediately provided with the professional support needed for me to learn to listen and speak. Without that intervention from the public health nurse, it is possible that my hearing loss would not have been detected until I was older and not developing speech. I am very grateful to that public health nurse and to my family and the doctors for that early action.   

We returned to the United States when I was three years old. The early intervention and speech therapy support I was provided in England and the United States prepared me to attend mainstream kindergarten with my peers of normal hearing. I attended schools with normal hearing children from kindergarten all the way through university. I also have a Master’s degree. I am thankful for hearing technology and the professional expertise that was available to me when I was young to learn to listen and talk so I could achieve these life goals.

All children develop language in the first years of life.  Children with normal hearing come into the world listening to sounds around them. Over time, their ability to hear naturally progresses to their development of listening and spoken language skills.  The time window for this development is short.  The longer a child’s hearing loss goes undetected and untreated, the less time there is to address the permanent impact that deafness will have on his or her development.   

Applying this WHO rate, we anticipate that there are about 240 children born with hearing loss every year in Mongolia.

Today we can test newborns for hearing loss. We can identify hearing loss in babies soon after birth. If the family wishes for their baby with hearing loss to have a chance to listen and talk, professionals trained in pediatric audiology can provide hearing aids or cochlear implants to enable the child to hear.  With the advanced hearing technology combined with professional support in speech therapy, and an involved family, it is possible for the child to learn to communicate through listening and spoken language in spite of his or her hearing loss. But, to achieve this, we have to begin the intervention during those important early years of life. We cannot wait to address hearing loss in children when they are 3, 4, 5 years of age or later. At that ages, it is difficult to achieve the same level of outcomes because the brain has completed that stage of development. 

A visit to Vietnam in 2008 opened my eyes to the general lack of awareness, limited resources, and shortage professional expertise that exists in many low- and middle-income countries to help babies and young children with hearing loss. I know my life would have been very different had I not received the services I did when I was young.  I saw an opportunity to pay it forward and help children with hearing loss living in low resource areas. I wish for all these children to have the early support necessary so they can grow up and have every chance to lead successful lives.

The Global Foundation For Children With Hearing Loss is an American nonprofit organization. We achieve our mission by collaborating with partners in low- and middle-income countries to identify and address gaps in the system of support for young children with hearing loss. Our professional team is comprised of otolaryngologists, audiology doctors, speech therapists, educators, and academics from five countries who lend their time and talents to our programs. The Global Foundation does not provide direct service to children and families.  Instead, we work with our local partners to build professional expertise, resources, and services so that the professionals and families in the countries can provide care to their own children who are deaf or hard of hearing.  We feel this is a much more sustainable approach. 

- What is the impact of hearing loss on children?

- Hearing loss is one of the most common birth anomalies. The World Health Organization estimates that significant hearing loss affects 3 per 1000 newborns. Hearing loss is even more common in infants admitted to intensive care units at birth. Applying this WHO rate, we anticipate that there are about 240 children born with hearing loss every year in Mongolia.

Research suggests that the most intensive period of speech and language development is during the first three years of life — a period when a child’s brain is developing and maturing. If a child is not exposed to language during this period due to hearing loss, he or she will have more difficulty developing language and reading skills. In addition, during the early stages of life, the brain builds the nerve pathways necessary for understanding auditory information. For these reasons, identifying hearing loss as early as possible enables parents to pursue treatment options early so that a child can learn to communicate comparably with his or her hearing peers.

The National Center for Hearing Assessment and Management (NCHAM) in the United States reports that detecting and treating hearing loss at birth for one child saves US $400,000 in special education costs by the time that child graduates from high school.

Unfortunately, community awareness for pediatric hearing loss and its implications is generally low in Mongolia and in many places in the world. One possible reason is that people cannot see the disability. Without newborn hearing screening, it is likely that many babies with hearing issues will not be identified until 1-2 years old when they should be learning to talk. It is usually at that stage when parents start to wonder if their children are not hearing well. So, the newborn baby hearing screening we are implementing in Mongolia provides a more proactive approach. The Mongolians will be able to identify the problem when the baby is very young, enabling more time for interventions and positive outcomes.

- How do you cooperate with Mongolians?
- In 2014, the Mongolian Ministry of Health issued a mandate to make newborn hearing screening a national standard. The goal is that every baby in the country would be screened for hearing loss at birth. The National Center for Maternal and Child Health was the only public birthing hospital to screen newborns at that time. Limited resources made it difficult to achieve the vision of the mandate on a broader scale.  

The Global Foundation For Children With Hearing Loss is partnering with the National Center for Maternal and Child Health, Path Medical, and Rotary Club of Ulaanbaatar Peace Avenue to implement the “Save Silent World” project and address this need. The goal is to make newborn hearing screening nationwide in Mongolia and has the support of the Mongolia Ministry of Health. 

By September, 2016 the Global Foundation and the Rotary club raised enough money to provide hearing screening equipment for the three maternal hospitals, National Center for Maternal and Child Hospital, and First Central Hospital in Ulaanbaatar. 

With doctors of Amgalan maternal hospital of UB city

With doctors of National Center for Maternal and Child Health Center

Since then, the Global Foundation and its grantors have provided more supplies to these hospitals as well as additional hearing screening equipment to the Nalaikh and Baganuur district hospitals. Now for the first time, all seven public hospitals that work with babies and young children in Ulaanbaatar have the potential to screen newborns for hearing issues. This represents about 40,000 babies born in the Ulaanbaatar hospitals every year or about 50% of total births in Mongolia. 

In 2018 to date through August, 15,000 newborns have been screened so far.  The two district hospitals and one of the maternity hospitals just recently started their hearing screening programs. Therefore, the total number of babies screened will continue to rise in the second half of the year and into the future.

We are now working on a tracking system that connects the hospitals to a central database. The hospitals are tasked with uploading their screening data to this central database which is managed by the National Center for Maternal and Child Health.  The database will enable more efficient management of referrals and any necessary follow up for babies who fail the initial hearing screening at the maternal hospitals.  It will also provide reliable etymology data such as the incidence of hearing loss in children and it will ensure quality control of the overall program.  

The Global Foundation and Rotary Club UB Peace Avenue are supporting the goal of the National Center for Maternal and Child Health to produce a report on the screening program in Ulaanbaatar to the Ministry of Health by July 2019 with the aim of garnering support to expand the program nationally. 

In addition to the development of a hearing screening program, the Global Foundation For Children With Hearing Loss is providing training in pediatric audiology to Mongolian ENT doctors and in speech therapy to Mongolian therapists and teachers.  It is essential that there is strong local professional expertise to help babies and young children with hearing technology and therapy and educational support after they are identified with hearing loss. This capacity building is the purpose of the training and professional development provided by the Global Foundation.   We also offer Parent Education sessions to help inform parents of children with hearing loss about how to help their children advance their listening and spoken language abilities.

- Is there any method to check children’s hearing loss instead of screening device?
- There are subjective ways to check a child’s hearing such as clapping and making noises. But these are not scientific or reliable measures.  Objective testing, as what is now provided by the hospitals, is the appropriate way to confirm a hearing loss in a child. There are two types of tests. One is OAE which is very quick to do – about 30 seconds to one minute. The other test is ABR which is a bit more involved. Both of these tests are easy for the hospital to administer and are not harmful to the child in any way.  

Newborn baby is being checked by hearing device

Given the permanent impact of untreated hearing loss on a child’s development and the short time window we have to address hearing issues in children, it is very important that parents are aware of the hearing screening test. If their hospital does not provide the test for some reason, they should ask for it before they leave the hospital after giving birth. 

There are different levels of hearing loss ranging from mild to profound. Even though a child with a moderate hearing loss can hear some things, the hearing loss could still have a potentially negative impact on the child’s social behavior, speech, or success in school. Therefore, it is important to identify hearing loss and then provide the necessary hearing aids and support as early as possible.

Progressive hearing loss is another issue to be aware of. A child born with normal hearing may experience declines in their hearing ability over time. Therefore, a child’s hearing should be tested by a doctor before they start kindergarten and each year after that.  Anytime there is concern of ear infection or loss of hearing, parents should immediately take action. 

- Is every newborn baby checked by hearing device after birth in USA?
- More than 95% babies born in the United States are screened at birth. Newborn hearing screening programs are governed by the states in the USA. The USA has an extensive program that not only manages screening but also ensures that those who do not pass have early intervention services. 

- What is the common reason baby born deaf?
- There are many causes for hearing loss. Genetics, infections such as rubella, ototoxic drugs, premature birth, jaundice and drug and alcohol use when pregnant are a few causes that immediately come to mind. 

Ulaanbaatar, Mongolia

- You said that you use hearing device and implant since when you were one year old. Do you remember first time you heard things? Why I’m asking this question is in some videos children who use device first time are surprised and feel happy by their parents’ voice in very first time.

- I was only 11 months old so I do not remember that time. But my mother said I did have a reaction to sounds when my hearing aids were turned on.  The videos are heartwarming, aren’t they? The children are so surprised that can hear something. These are great but they can be misleading for parents. The children might hear something when their hearing aids or cochlear implant is activated. However, it does not mean the sounds have any sense for them or that they will immediately start talking now that they can hear.  Think of a newborn baby with normal hearing.  

There is no newborn baby in the world that is delivered with speaking ability. The baby goes through a natural developmental process.  It is the same thing for a young child with significant hearing loss. The first time they hear sound through their hearing technology is as if they are a newborn baby with a listening age of 0.  The child might be 2 years old chronologically, but they are newborn when it comes to their listening and speaking ability. It’s hard sometimes for parents and family to understand this. The technology is amazing but the technology is just one part of the package of care, just as screening is one part. The child also needs the support of their family and therapy professionals who can help them make sense of those sounds and progress through developmental phases to eventually learn to listen and speak. 

- Have you been worked in developing country as like Mongolia before?

- The Global Foundation For Children With Hearing Loss has been working in Vietnam since 2010. We also did short project with the Ministry of Health in Ecuador in 2017. The projects in every country are a bit different depending on the areas of need and the priorities of our partners.

Hanoi, Vietnam

- You said that in next July you are hoping to give report to the Minister of Health. What is your anticipations after that?
- We are supporting the National Center for Maternal and Child Health in efforts to produce a report for the Ministry of Health. Our goal is that this report will provide some useful insights to the prevalence of hearing loss in Mongolia, the importance of the issue, costs and human resources, and the efficiencies of the newborn hearing screening effort in Ulaanbaatar. For the hearing screening to expand from the capital to become a national effort will require additional significant funding sources and more government engagement.  The National Center for Maternal and Child Health, the Global Foundation For Children With Hearing Loss, and the Rotary Club of Ulaanbaatar Peace Avenue are all working together to position the hearing screening effort as effectively as possible to gain such national support from the Ministry of Health. 

- How do you feel when you help people especially for newborn babies?
- It is the most rewarding feeling ever. I mentioned earlier that before starting the Global Foundation For Children With Hearing Loss, I worked in business.  While I had some good experiences and learned a great deal during that period of my career, I always felt like there was something else I should be doing.

The first time I visited Vietnam in 2008, I realized that I had a great opportunity to make a real impact on people’s lives. I was inspired to start this non-profit organization and never looked back. I have thoroughly enjoyed all the people I have met and the projects we have accomplished in the countries where we work. I have been honored to work and learn alongside an amazing team of professionals at the Global Foundation For Children With Hearing Loss. It is challenging work but the impact on the children is such a great reward. We have had the chance to reunite with Vietnamese children who came to us when they were very young. They are now in the mainstream grade school doing well and their parents and therapists are so proud.  To see this life-changing progress and know that we played a small part in their story is  amazing. This is, by far, the most satisfying work that I have ever done. 

- So, what is your next purpose on hearing loss issue?
- We receive regular requests from many entities in different countries who are asking our help in developing services for their babies and young children with hearing loss. But, right now, we are very focused on what we are doing in Mongolia and Vietnam. We will continue this work and see what the future brings. 

- Thank you for your time.

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