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.


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Raising a child with Treacher Collins syndrome

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The 2012 children’s novel Wonder is being adapted into a Hollywood movie starring Julia Roberts.

Wonder tells the story about a 10-year boy with Treacher Collins syndrome who starts school after being home-schooled for years. Jacob Trembley plays the boy, Auggie, who gets bullied because of his rare facial medical deformity. The film is scheduled for release in April, 2017.

Treacher Collins syndrome is a rare, genetic condition affecting the way the face develops — especially the cheekbones, jaws, ears and eyelids. These differences often cause problems with breathing, swallowing, chewing, hearing and speech.

How severe the syndrome is varies widely from child to child. Treacher Collins syndrome is present when a baby is born (congenital).

The syndrome occurs in about 1 in 50,000 newborns worldwide.

Blogger Eloise, herself a parent of a child with the syndrome, shares both her concerns and hopes for the film in this blog:

Ten things about parenting a child with Treacher Collins Syndrome

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Read more: How children with Treacher Collins and hearing loss can benefit from a Baha solution

Landon loves her new Baha 5 sound processors

How adorable is this!

One of our favorite bloggers, Eloise, shared this video of her four-year old daughter Landon who just upgraded to two Baha 5 sound processors on her Baha Softband. She is playing dress up while streaming music directly to her sound processors.

“What does the music sound like, Landon?”
“Frozen.”

But of course!

 

Read more: How to pair and connect your Baha 5 Sound Processor to your iPhone

University student Lucy about her year after winning the Anders Tjellström Scholarship

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Remember Lucy Ritchie? The first winner of the 2015 UK Anders Tjellström Scholarship Award?

It has been an exciting year for the Scottish student. Here’s her story in her own words:

“Next month will be a year on since I found out I was going to be awarded the Anders Tjellström Scholarship. I can’t quite get over how quickly time has passed. The last year has been a very busy one for me – when I received the news I was just finishing my first year at Robert Gordon University in Aberdeen where I am studying Management with Marketing.

The transition from school to university has been enjoyable and has allowed me to gain more independence with living away from home. This summer I got a job in the seaside village where I spend my summer holidays. I very much enjoyed working along with the staff and serving the lovely customers – many of whom congratulated me on the success of my award after seeing it in the news.

Come September it was time to take on one of the biggest challenges I’ve done to date, study abroad.  As part of my degree I took part in the Erasmus program, where I went to study in a different country for a semester.  I packed my bags and moved to a small city called Koblenz in Germany. I soon discovered I was the only native English speaker out of all the international students and what felt like the whole city. This made things slightly more challenging but the time I spent there was a very rewarding experience. I met some amazing people from all different cultures, had the privilege of teaching someone English and got to explore the beautiful country that Germany is.  I am now back in Scotland, ready for second semester.  My next adventure that lies ahead will be my third year work placement, which I look forward to – wherever I end up working.

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None of the above would have been possible without my Baha sound processor and the support of the Anders Tjellström Scholarship.  Throughout my life I’ve had many challenges to face, and having my hearing solution has allowed me to lead a completely normal life regardless of it all. My speech and hearing is just like everyone else’s and enables me to lead a normal everyday life socially and professionally.

The scholarship allowed me to travel throughout my time in Germany, visiting Berlin, Frankfurt and various other cities in the west.  There were a lot of Christmas markets visited!  I hope that it will also be able to help me in third year and help pay for rent wherever I end up.

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I have lived my life beyond many people’s expectations and with the contribution from the Cochlear UK Anders Tjellström Scholarship Award, I can continue to do so and give people living with Treacher Collins syndrome and hearing loss a bit more hope for the future.

I would like to say a massive thank you to Cochlear.  Their hard work globally has been life changing for so many people and I hope that with my story and their continuous hard work, we can continue to make a difference to people’s life with the products and services of Cochlear.”

 

Lucy Ritchie is the first Anders Tjellström Scholarship winner in the UK

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“Being profoundly deaf has in no way stopped me from taking the countless opportunities I have been given, thanks to my Baha hearing solution!”

Lucy Ritchie 19, from Glasgow, Scotland, was born profoundly deaf with Treacher Collins syndrome. She has been a Baha user since the age of one and relies on her Baha sound processor every awake minute of her life. She is currently studying for a BA (Hons) Management with Marketing degree at Robert Gordon University in Aberdeen. And on July 2 she was awarded the very first Anders Tjellström Scholarship in the UK!
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The oldest of three children, Lucy refused to be defined by her condition, despite it making her facial appearance different and giving her medical complications along the way. Unconnected with the condition, she also had the added challenge of dyslexia.

Treacher Collins syndrome affects the development of bones and other tissues of the face, which means that Lucy was born without external ears and with small cheek bones, jaw and chin. Over the years she has undergone 20 surgical procedures to make breathing, eating and hearing easier. Early on, her parents were told that Lucy would never be able to hear, have a normal childhood, attend a mainstream school, be able to talk well or live on her own as an adult. Lucy is delighted to have proven these theories wrong thanks to the support from her ENT and respiratory consultants, maxillofacial surgeon, audiologists and parents. Having the Baha System has enabled her to achieve all of her ambitions.

“I don’t look in the mirror all the time, and the Baha helps me to forget that I’m different to other people and can do pretty much everything that anyone else can do. I can’t swim or shower with it, but that’s about all,” she says.

This has given Lucy the confidence to ignore the daily stares she receives from strangers and get on and embrace her life. She enjoys travelling and recently flew to Spain to spend time with a friend who had moved there. Far from shying away from the limelight, Lucy has sung in a choir in front of thousands of people, took to the catwalk in a school fashion show, and she’s been a scout leader and represented her school in tennis and hockey.

Life would have been very much harder for Lucy if she had not had the Baha sound processor and needed to rely on lip reading, facial/hand gestures or sign language. For Lucy’s level of hearing would be equivalent to putting your fingers tightly into your ears and multiplying that difficulty in hearing by two, says Jim Harrigan, head of paediatric audiology at Glasgow’s Royal Hospital for Sick Children. He says that Lucy had been a true inspiration during her 10 years as his patient. “She coped extremely well despite all her extra complications: her facial surgery and breathing problems. Nothing seems too much of a challenge for her.”

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Lucy aims high and is diligent and committed in her studies. She attended mainstream school and achieved excellent qualifications. She has participated in a multitude of additional activities including singing in a choir, skiing, playing competitive hockey, assisting with the Scouting movement and was IT Director of her school’s Young Enterprise Company. All of these additional activities would have been highly likely not possible if Lucy did not receive the benefit she obtains from her Baha System.

“When I received the email to say I had been awarded the scholarship I was lost for words and overwhelmed with excitement. I have never remembered life without [my Baha implant]. Being awarded the scholarship feels like a reward for the tough aspects I’ve had to go through with my medical condition. Having my Baha has allowed me to have perfect speech and hearing just like anyone else.

I put myself forward for this scholarship as a way to show people that just because you have a hearing impairment it doesn’t stop you from achieving your aspirations or dreams. With the right attitude and a pot of determination you can succeed or be anything you want to be. I have lived my life beyond many people’s expectations and with the contribution from the Anders Tjellström Scholarship I can continue to do so and give those who are experiencing something similar hope for the future. Without Cochlear I wouldn’t be able to have the life I do, be able to do all the things I am doing and keep up with my peers and so for that I am so thankful to Cochlear for allowing and making this happen.”

deaf-hearing-loss-scholarship

Professor Anders Tjellström himself was present and personally handed Lucy her award in a ceremony at the Royal College of Physicians and Surgeons of Glasgow on July 2.

“Lucy’s story is really amazing,” says Professor Tjellström. “In spite of her many problems especially during early childhood, she has already achieved so much in her life. ‘Impossible’ is a word she does not understand.”

Lisa Aubert, Cochlear UK General Manager commented, “The UK Cochlear  Anders Tjellström Scholarship was set up to help  Baha recipients achieve more in further education and we are extremely proud to honour  our first winner Lucy, who has shown perseverance and leadership, while benefiting from Cochlear’s state-of-the-art technologies. We look forward to seeing what the future holds for her.”

Lucy’s inspiring story made headlines in both the Evening Times and Scottish The Sun:

Lucy Ritchie Evening Times

LucyRitchie The Sun

Applications are now open to take part in the next Cochlear UK Anders Tjellström Scholarship Award. The deadline to receive submissions is October 31 2015. Please contact Kate King kking@cochlear.com for more information.

Photography by: Gerri Campbell

Ear Community brings people with atresia/microtia and hearing loss together

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Ear Community is a charitable organization that supports people with Microtia, Atresia, Hemifacial Microsomia (HFM), Treacher Collins, Goldenhar Syndrome or a hearing loss. It’s founded by Melissa Tumblin, a mother whose daughter was born with Microtia and Atresia.

Cochlear Americas has been a sponsor for years – and in 2014 alone was able to help children like Milago, Eliana, Dustin and Randy hear with a Baha System.

Soon it’s time for the Ear Community’s popular Summer picnics to kick off again. It’s a great opportunity for Microtia and Atresia families to come together and share experiences. Medical professionals such as surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device companies are on site to help educate people on options on surgery and hearing loss.

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Natasha and Becky with Cochlear Americas educating families on the Baha 4 Attract System in 2014

This year’s picnics will take place in Australia, Denmark, Pennsylvania (USA), Colorado (USA), Washington (USA), and South Africa:

Melbourne, Australia | Saturday, March 14, 2015
Time: 11AM to 3PM
RSVP to Lisa at: AustralianEarCommunityPicnic@hotmail.com

Hellerup, Denmark | Sunday, May 31, 2015
Time: 11AM to 3PM
RSVP to Melissa at: DenmarkEarCommunityPicnic@gmail.com

Pittsburgh, PA | Saturday, June 13, 2015
Time: 11AM to 3PM
RSVP to Kim at: PittsburghEarCommunityPicnic@gmail.com

Broomfield, Colorado | Saturday, July 25, 2015
Time: 11AM to 3PM
RSVP to Melissa at: ColoradoMicrotia@hotmail.com

Seattle, Washington | Saturday, August 8, 2015
Time: 10AM to 2PM
RSVP to Jodi or Jaime at: SeattleEarCommunityPicnic@gmail.com

Johannesburg, South Africa | October (TBD), 2015
Time: 11AM to 3PM
RSVP to Mark and Melissa at: SouthAfricaEarCommunityPicnic@gmail.com

Cochlear is a proud partner of Ear Community and looks forward to another fun-filled year ahead! Visit earcommunity.com to learn more about how you can help – or be helped!

 

Inspirational video: 11-year old Ashley shows his life with Treacher Collins and Baha sound processors

This is a great and powerful film about Ashley, an 11-year old boy with Treacher Collins Syndrome and hearing loss.

He was born without a jaw, cheekbones and ears. As he cannot use in-the-ear hearing aids, Ashley has bilateral Baha implants to help him hear.

In this short film, Ashley shows us how he gets around the daily challenges that his symptoms present and how he deals with the bullying that he has experienced as a result.

Very moving – and what an amazing, inspirational kid!