Guest blog: Parents give daughter with Treacher Collins Syndrome the gift of hearing through bone conduction

Six months before writing this, father Emre, 31, and mother Öznur, 30, welcomed “miracle baby” Elif into their new family. Emre wrote Elif’s story from Istanbul, Turkey, where he works as a customer manager in a private company, and Öznur works as a banker. Emre’s story has been translated and edited from its original form in Turkish.


Learning about our baby’s syndrome and making an important decision

Elif sits with her parents while wearing her first Baha device, a Baha Intenso sound processor.

Our daughter Elif came to the world with Treacher Collins Syndrome, a rare genetic disease. Treacher Collins is a genetic condition that causes deformities of the face and head, often characterized by low eyelids, full ears and an underdeveloped jaw. In some cases people with Treacher Collins Syndrome may also have cleft lip and palate. One baby in every 50,000 births has Treacher Collins Syndrome.

We first learned about this syndrome during my wife’s pregnancy. During the routine examination in the 18th week of pregnancy, the doctor found out Elif had a double-sided cleft lip. One week later, the doctors detected double-sided cleft palate and a double-sided microtia (absence of external ears). Additionally, it turned out that the baby’s jaw was small and pushed back. The doctors suspected some of the possible explanations, including Treacher Collins Syndrome, and mentioned the risks at the same time. Later on, we discussed our opinions on whether to continue the pregnancy. We asked ourselves many questions at this point, and the answers we gave to these questions showed us that Elif should come to the world.

Can happiness be defined?

There is a general assumption that an individual who has physical deformaties will suffer and will be unhappy. Can happiness be defined? We believe that happiness is not in the physical world but in the heart. On the other hand, we believe that every life is sacred. We considered every effort to provide a real life for a physically impaired individual to live, first of all, as a human being. Life evolves in meaningful way, for us and our daughter, and the struggle itself is meaningful. We started to wait for our miracles.

Elif is born and begins to hear

Elif could not breathe on her own, because her jaw was small and pushed back, so she was immediately connected to the respirator and stayed in intensive care for 62 days. At the end of this process we came home with the breathing apparatus. In the second month of her development, Elif was completely free from the respiratory device for life-long use.

Doctors discovered that while Elif has no problem in her inner ear, she has hearing loss in the middle ear. She first began to hear with the help of a Baha Intenso sound processor, brought to us from the United States. Elif showed a noticeable improvement in her perceptions and reaction to her surroundings wearing her Baha device on a Softband. She now wears a Baha 5 Sound Processor.

Solidarity with parents and individuals with Treacher Collins Syndrome

Elif wears her first Baha hearing device, the Baha Intenso sound processor, on a Softband.

After our daughter came to this world with this syndrome, we wanted to find people who have similar situations and to learn from them. I have communicated with various associations and groups abroad on social media. We received very useful information and positive support messages, and we saw the power of the love beyond boundaries.

While Elif was in intensive care, when we were not with her, we found other affected families in our country through our own efforts and visited a significant number of them. Later, we began a meeting with some of the families with Treacher Collins living in Turkey. In the name of starting something new, we have built solidarity among ourselves.

The biggest problem facing people living with this syndrome is others’ negative attitudes and behaviors exposed to them by society. However, the only expectation these individuals have is to live like normal individuals in society and to not be exposed to others’ attitudes because of their external appearance.

Elif’s journey on social media

We share the processes of Elif’s journey in Turkish on the social media accounts that I set up in Elif’s name. Anyone who wants to support us or contact us can reach us at these links on Facebook or Instagram. We are also excited to announce that in September we will publish a book about Elif’s journey.

Every individual is valuable

We are beginning our awareness work with an enthusiastic amateur spirit, and our goal is to raise awareness that every human being is valuable just because they are human, to be able to feel that every person can overcome their challenges and that their value is not based on their appearance to others.

The opinions expressed in this blog are my own views and not those of Cochlear.


Click here to learn more about the importance of early intervention in a child’s hearing loss. Looking to take action on hearing loss? Click here to find a clinic near you.


Want to share your story, hearing tips or Baha advice with The Baha Blog? Let us know! Find us on Twitter at @TheBahaBlog, on Facebook at our page The Baha Blog or via email at bahablog@cochlear.com.

World Health Day: Depression Tops List of Most Widespread Diseases

The latest estimates reveal that more than 300 million people worldwide suffer from depression, a figure that has increased by 18 percent from 2005 to 2015. Hearing loss is closely tied to depression, studies confirm.

(Source: pixbay.com)

Today is the World Health Day, the high point in World Health Organization ‘s (WHO) year-long campaign “Depression: Let’s Talk”. Depression is a silent and hidden condition, that can affect anyone. The subtle signs of the disease can easily pass unnoticed, leading to low levels of recognition and access to treatment. In many cases, once the disorder is acknowledged, stigma can be so damaging that sufferers refuse to seek help. WHO warns that untreated depression results in a global economic loss of a trillion US dollars every year, and prompts international governments to allocate more funds to mental health.

Depression is a mental condition characterised by persistent sadness, critically reduced capacity to carry out daily activities, and a feeling of emptiness.

Hearing loss is connected to depression

Unsurprisingly, many studies have confirmed the link between hearing loss and depression. The percentage of depressed adults, particularly women, increases with the decline in hearing, from 5% in those without hearing problems to a staggering 11% in those with hearing impairment, according to a 2014 study published in JAMA Otolaryngology – Head and Neck Surgery.

In many of our previous blog posts, the recipients of a bone conduction hearing implant mention social isolation as one of the tolls hearing loss took on them. Mona Andersson, the world’s first recipient of a bone conduction implant, recalls her mental discomfort as her hearing capacity declined in her teen years.

“I felt embarrassed and I would choose to hide myself”, says Mona in an interview with Cochlear Bone Anchored Solutions.

Like depression, hearing loss is a silent condition that affects more than 360 million people worldwide – over 5% of the world’s population, warns WHO. Depression, social exclusion, and lower chances of employment are possible effects of disabling hearing loss.

Take the signs of hearing loss seriously

The US National Institute on Deafness and Other Communication Disorders recommends people who answer “yes” to more than two of the questions listed below to visit an audiologist.

  • Do you have a problem hearing over the telephone?
  • Do you have trouble following the conversation when two or more people are talking at the same time?
  • Do people complain that you turn the volume of the radio or television up too high?
  • Do you have to strain to understand conversation?
  • Do you have trouble hearing in a noisy background?
  • Do you find yourself asking people to repeat themselves?
  • Do many people you talk to seem to mumble or not speak clearly?
  • Do you misunderstand what others are saying and respond inappropriately?
  • Do you have trouble understanding the speech of women and children?
  • Do people get annoyed because you misunderstand what they say?

“The Baha 5 Sound Processor has given me back my life, my true passion”

Shelly Shannon is a first grade teacher from Tampa, Florida. She is passionate about her work and the teacher-student exchange.

“I remember the day I woke up and I couldn’t hear. It took my life away”, says Shelly, worried she’d never be in the classroom again. She recounts the difficulties of working as a teacher affected by hearing loss and the exhaustion she’d experience after a day struggling to hear her students.

As soon as she received her Baha 5 Sound Processor, Shelly’s life came back to normal. The sounds she experiences are clear and crisp, regardless of the situation.

“We sit on the porch, listen to the birds sing, and even through the sound of the rain in the background, I can still have a wonderful conversation with my husband”, Shelly says.

With the Baha 5’s Made for iPhone technology, Shelly can easily stream music, TV shows, and video calls directly to her sound processor. Other features include the True Wireless technology, which, according to Shelly makes hearing even better. The TV streamer, the Phone Clip and the Mini Microphone simplify the experience of sound with no strings attached.

November 9 is Microtia Awareness Day

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November 9th is the first ever Microtia Awareness Day in the US, and is dedicated to spreading hope and knowledge concerning the congenital birth defect, which is named efter the Latin terms for little ears.

Approximately one out of every 8,000 babies are born with Microtia – a malformed outer ear – either on one or both sides. Children born with microtia will usually have a functioning inner ear, but as the outer and middle ear are affected, they will have conductive hearing loss. For children with microtia a conventional hearing aid is more than likely not an option, however they may benefit from a Baha solution that doesn’t require an outer ear to sit on and can bypass the problem and send sound directly to the inner ear.

The Ear Community Organization founded Microtia Awareness Day in 2016 and was submitted by the Tumblin family. Melissa Tumblin founded Ear Community in 2010 after stumbling through the hurdles and challenges of finding answers for her daughter when she was born with Microtia. Since then, Ear Community has brought over 6,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members either have the condition or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives. The Registrar at National Day Calendar approved Microtia Awareness Day in October.

Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear!

microtia-awareness-day

Download the Atresia/Microtia folder here

In the news: The Baha 5 Power proves to be lifesaver for Scottish couple

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Charles Carmichael’s new hearing technology proved to be a lifesaver within weeks of being fitted.

When his diabetic wife, Eileen, collapsed at their home this summer, he was able to talk to the emergency dispatcher so they could identify if she was having another stroke.

“Her breathing was so faint, but I was able to hear her voice through my Baha [5 Power Sound Processor] and answer the responder’s questions,” said Charles who suffers from Chronic Suppurative Otitis Media (CSOM)

Struggling with hearing loss all his life, Charles was first implanted with a Baha solution on his left side in 2012. Three years later, he had his right ear fitted as well and his problems with discharging ears stopped. In June 2016 he upgraded to the Baha 5 Power and says the new technology is amazing.

“My original Baha sound processors were fantastic, but I still struggled in big groups, but with these new ones I can hear questions from the back of a room and have conversations with background music on – it’s no problem.”

Charles is his wife’s main carer and the new Baha technology now allows him to hear her clearly even when in another room.

Eileen said: “If anything happens and I need to raise the alarm, he can immediately hear me – I feel safer.”

baha-power-charles

Read the full article

Treating hearing loss after acoustic neuroma removal

QuestionI had an acoustic neuroma removed in 2002. The tumor was also involved with my facial nerve. While removing the tumor mass they had to take out the hammer, anvil and stirrup.

Will a Baha work in my situation? // Kevin

Answer: Hi Kevin, thanks for your question.

Removing an acoustic neuroma can lead to single-sided deafness (SSD). The Baha System uses the body’s natural ability to transfer sound.  Instead of trying to push sound through the damaged area in the outer or middle ear, it reroutes the sound directly through bone, from the damaged ear to the working inner ear on the other side. This makes it easier to understand speech in noisy situations and reduces the attenuation of sounds from the deaf side So the bone conduction implant actually sends the sound through your skull bone instead of via air.

For instance, if you scratch your head you can hear it, right? The same with bone conduction. You just hear the sound in a different way.

We have several stories from people with SSD who benefit greatly from the Baha System, such as Tim and Victor, using the Baha Attract and Connect systems respectively. Discuss with your health care professional what option would be best for you.

Another good thing is that you can always try the system before you decide to get it. Your hearing care professional can fit a Baha Sound Processor to a Softband or a testband on your head. This gives a good idea of the benefit.

Good luck!

//The Baha Blog team

Read also: When is Baha System right for me?

In the news: Baha Attract surgery helps people hear again

child-baha-attract-magnet

Seven-year-old Paige from Wisconsin, USA, was born with single-sided deafness and no ear canal on her right side.

As an infant she wore a Baha Softband, allowing her to hear and communicate just like other children. Now, at seven, she was finally fitted with a Baha 5 Attract System!

baha-5-behind-ear

”It’s a little more freeing”, Audiologist Sarah Childress of SSM Health said. ”So if they want to take it off and go swimming or do other activities there isn’t a post getting in the way. The other issue is the device itself has been upgraded so the computer chip on the inside is working much better, and it’s able to pair wirelessly with technology, which is giving patients an easier time out in the real world and it actually goes directly to iPhone so they can make some adjustment using an app on their phone.”

A piece of technology that could help many.

“There’s certainly a lot of patients out there that could benefit from this technology that don’t know about it so hopefully we can serve those people,” Dr. Justin McNamar added.

See the video and read the whole story here!

paige-baha-5-attract-system