Some Thoughts on Hearing Services in London v. New York City

This past March, we relocated our family to London from New York City.

Yan and I had always dreamed of living in Europe. When this dream became a reality, we jumped at the opportunity. To raise a family in such an international city, and in such close proximity to so many other countries (namely for me, France ;), was beyond exciting.

Of course, the decision came with drawbacks. I was seven months pregnant when we moved. The idea of leaving my beloved obstetrician and entering a whole new healthcare system was daunting to say the least during this vulnerable time. Further, we made the very difficult decision to (somewhat) separate Sonya from the amazing services she was receiving in NYC for hearing and speech. Above all, we were leaving family and friends behind in the U.S. So very hard to do and we miss them so much.

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This little New Yorker will always have a place in her heart for NYC ❤

Five months (!) later, I do feel like we have successfully navigated some turbulent seas. We are currently living in the South Kensington area of London. Sonya finished her school year at a lovely nursery school in Chelsea and in just a couple weeks will be entering reception (which I believe equates to prekindergarten in the US) at an all girls school in our neighborhood.

In June, I gave birth to a baby boy Wolfgang Alexander (“Wolfie”). Just nine weeks in, and we honestly can’t imagine our life without him. He is just the sweetest, most loving baby, who absolutely adores his sister and she him.

Sonya and Wolfie

Despite the fact that mothering a newborn is similar wherever you live, living in London is pretty different. New job (for Yan), new schools, new friends. Sonya is already acquiring an English accent, which is both adorable and surreal. For those out there who are considering such a move (and who have kids with hearing loss), here are some of the biggest differences between living in NYC versus London.

For the most part, the services for hearing loss in the U.K. are much less than in the U.S. (especially compared to NYC). And to be honest, for me, this was the scariest aspect of our move.

In New York, Sonya received the following services:

  • Three hours of individual speech therapy per week;
  • One hour of group therapy per week;
  • One hour of reading help from the Center for Hearing and Communication;
  • A hearing education specialist (or teacher of the deaf) who came to Sonya’s school three days per week for an hour each day; and
  • A Roger Touchscreen device, that enabled Sonya to better hear her teachers at school in a noisy classroom environment.

The following were either covered by insurance covered or we paid for privately:

  • The cochlear implant surgery (insurance)
  • The processors (and replacing broken pieces — most parts of Sonya’s processors were on a two-to-five year warranty, but once the warranty ran out, we had to hope insurance would cover. Our insurance did not cover the cost of replacing rechargeable batteries, for example, and at $250 a pop, it got expensive, quick.
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An evening stroll in South Kensington

In London — once registered with the National Health Service (NHS) — Sonya received:

  • A referral to meet with hearing loss professionals at the Auditory Implant programme at the Royal National Throat Nose and Ear Hospital. Here, experts in audiology, speech pathology and otolaryngology evaluated Sonya’s speech, her hearing and comprehension and her implants. It took five months to secure this appointment (The NHS is not an easy system to maneuver), but Sonya eventually was officially made a patient in this practice.
  • Through the NHS, Sonya’s CIs and accessories are covered (!). Broken or lost processors are now replaced and at no cost to us. Same with broken batteries and other accessories. Once the CIs are five years old, you are eligible to upgrade.
  • Mappings: Sonya will receive mappings annually at the CI center (and more frequently if needed).
  • Teacher training: We are working with a team from the Auditory Implant programme at the Royal National Throat Nose and Ear Hospital to come to Sonya’s new school and educate the teachers and headmaster on Sonya’s hearing loss and how to use her Roger Touchscreen device, as well as to evaluate the school from an acoustics perspective.

However:

  • Ongoing speech therapy is not included. Given Sonya is doing so well, she is not eligible for speech services through the local authority (i.e. the governing body for the area where we live in London) or NHS. Thankfully for us, the Center for Hearing and Communication, where Sonya used to receive her services, offers a Teletherapy program. I plan to talk about this in a future post, but overall, we love the fact that due to technology, we can continue to access the brilliant professionals based in NYC over our computer. Not only does it relieve any concern that Sonya’s speech could start to deteriorate due to our decision to leave NYC, but it has been a wonderful way to stay in touch with people who have been so important to her life so far.
  • ToD (Teacher of the Deaf) services are limited. For those unfamiliar, a ToD is a teacher who comes to the classroom to ensure that it is a good hearing environment for Sonya. In NYC, we were incredibly fortunate to have a well-trained ToD come to Sonya’s school three times a week to ensure she was hearing well in the classroom and playground. We will be lucky if we get someone once every six weeks here. There is an option to pay privately, but so far, the costs are crazy high (around £200 an hour) to do so. Further, to have a ToD in a London classroom is unusual. It’s sad to say, but there is definitely a stigma for a child who has one. (On the contrary in New York, where there were always numerous professionals in the classroom attending to different kids who had various needs).

There is so much to say about our time here so far. In truth, it hasn’t been the easiest transition. I was expecting a challenge, but this was a bit more than I bargained for 🙂 That said, there are many aspects to life in London that are so much easier than our life in NYC. Our neighborhood is saturated with green, with lovely private gardens on every block. We can actually see the sky (Sonya has developed a fear of thunderstorms because she can actually see clouds here); and overall, life is more relaxed and laid back. Londoners are always shocked when I describe their city as calm, but it’s all relative. The best part is that Sonya has adapted incredibly well here. She easily makes friends and continues to charm everyone who meets her.

Given the limited services for hearing loss, I plan to be even more involved in Sonya’s education than before as I feel solely responsible to ensure that she has an equal opportunity to be successful. It’s daunting for sure, but I keep telling myself that if I can survive living in New York City for 13 years, I can do anything 🙂

Here is a video from last weekend of Sonya enjoying summer in London town ❤

xx

Missy

Are You Happy?

Back in June, while undergoing IVF, I became depressed. It happened suddenly (and most likely due to the hormone treatments I was injecting twice daily into my belly). My mind would obsess and worry about inconsequential things. I didn’t sleep much. I had bad dreams that would cause me to wake up with a pit of anxiety in my stomach. Then sadness. A deep sadness that didn’t go away immediately after the egg retrieval, but one that lingered for weeks. It wasn’t good.  Continue reading “Are You Happy?”

Sonya’s Third Year Evaluation

In a month, we will celebrate Sonya’s third birthday! While I can’t believe three years have passed already, I also can’t believe we have only had Sonya for three years in our lives. She has had such a profound impact on who I am.

As Sonya approaches her big day, we are also working on transferring our speech therapy services from Early Intervention (which is state-sponsored) to our local school district. To do so involves a somewhat lengthy process, including:

  1. A referral from Sonya’s EI service coordinator, informing the school district that Sonya was born deaf, has been receiving speech therapy through EI and that she should be considered by the school district for special education services (i.e. speech therapy and in-classroom support);
  2. A psych/ed evaluation, which assesses the child’s physical, mental, behavioral and emotional factors;
  3. A speech and comprehension evaluation, which assesses the child’s current abilities; and
  4. Letters from Sonya’s audiologist and surgeon detailing her hearing loss and the tools she will need to succeed in school (i.e. FM system and receivers).

In the below clip, you can watch excerpts from Sonya’s speech and comprehension evaluation. The entire evaluation was nearly two hours, but this gives you an idea. Also, I was observing behind a one sided mirror – so the quality is a bit grainy.

Once the evaluation is complete, we met with a school administrator who discussed Sonya’s progress and whether she would be granting us the accommodations we requested. Since Sonya will be in preschool five mornings a week this year, we requested a hearing education specialist to be in the classroom with her three times a week; for the school to order an FM system (and receivers that fit on Sonya’s processors) that we can use; reading help once a week; group therapy and individual therapy.

The school board meeting was one I dreaded for a long time. I had heard horror stories from other parents, who said they would resort to tears and refuse to leave the room until the administrator granted an accommodation. I heard of another parent who brings a big black binder with her child’s adorable photo on the cover. Looking extremely organized, she runs the meeting! (It’s actually a phenomenal idea). Thankfully our meeting went very smoothly. That said, we will continue to have them annually until Sonya is out of high school. Chances are, we will face such challenges in our future.

In other news, Sonya has grown so much this summer. I have noticed that when Sonya has a developmental leap, she tends to remove her CIs more frequently. Yesterday, she refused to wear them at speech therapy. It took 30 minutes of prodding before she finally agreed to wear them (the game of hot potato finally coaxed her); and this morning, she threw them off just as we entered NYU’s Cochlear Implant Center for her three month mapping. It’s frustrating to say the least. Sonya speaks loudly without her CIs and tends to hurt herself too. Yesterday she was being crazy and hit her head on the corner of a bench and now sports a small red dot right below her hairline 😦

Something tells me that we are only starting to appreciate the true challenges that await us as parents of a ‘threenager’ 🙂

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Yep. She’s a threenager.

 

Five Takeaways After a Failed IVF Cycle

“Missy, I am calling to discuss the genetic results from your Counsyl test,” my OB said over the phone one February afternoon in 2014. At the time, I was just ten weeks pregnant. Like many Jewish couples, Yan and I underwent genetic screening early in our pregnancy. Prior to this call, my main concern as a newly pregnant working woman in America was how to attend the numerous doctor appointments when my job wasn’t showing much flexibility. This concern soon changed.

The doctor’s voice slowed as she delivered the news. We are both carriers of a hearing loss gene called Connexin 26, she told us. This means a one-in-four chance that the child I was carrying would have profound hearing loss. I remember how the doctor paused after she gave us this information, as if to prepare us for another blow. “You will also need undergo IVF for any future pregnancies, if you want to screen for the hearing loss gene.”

For those who are new to the world of fertility problems, IVF is the process of fertilization by extracting eggs, retrieving a sperm sample and then combining an egg and sperm in a laboratory dish. Since we have a known genetic issue, the embryos are then sent to a lab for preimplantation genetic diagnosis (“PGD”), where a cell is removed for genetic testing. The goal at the end of the process is to have at least one embryo that is tested for chromosomal normalcy and for known genetic mutations, which is then implanted back into the uterus where it will hopefully establish a pregnancy.

Three years later, I found myself at NYU Fertility Center, where I underwent a full physical, a saline infused sonogram (to ensure the fallopian tubes are functional and that the uterus is normal) and what seemed like 20 vials of blood before I was determined a candidate for IVF and PGD testing. Four months after that, I had completed a cycle. We had spent thousands of dollars. My body hurt. My emotions were all over the place.  And unfortunately, we will do it all over again in the coming months.

For parents in our shoes who are confronting the reality of screening future pregnancies for genetic hearing loss, I thought I would share my main takeaways:

  1. The timeline is SLOW especially when you include PGD testing. Once I was cleared for IVF, we started the PGD testing. Yan and I both gave blood. Sonya gave a cheek swab as did our parents (they were able to mail them into the lab). From there, the lab went to work creating a “probe” which is a test they perform on the future embryos. We could not start the IVF process until the probe was complete, which took about eight weeks. We used Natera to create the probe, and they were great to work with.Once the probe was complete, I had to wait until my next period. The IVF cycle started on day two of my period and was complete around 12 days later. Then I had the retrieval, where the eggs are removed from the ovaries. Four weeks later, the results. All-in-all, it took five months from beginning to end. My future cycle will not take as long, however, since the probe has now been created and can be reused in the future.

     

  2. The injections were the least bad part of IVF. My prior knowledge of IVF was limited to the fact that there were injections. Lots of them. And I would have to do them myself at home. The idea of the injection is much worse than the reality, however. In fact, they weren’t hard to administer at all (especially after childbirth, I mean, come on 🙂 Every morning and/or evening I administered at least two different medications subcutaneously – meaning just under the skin. The needles are short. Having my eyebrows threaded every couple weeks is WAY worse 🙂 My favorite part of this process was forcing Yan to watch. It completely freaked him out and I definitely dramatized the pain. I considered this my revenge for the fact that for women IVF is a bitch of a process. Men have no idea.How the medications affected me, however, was another story. Manic is the best word to describe it. The first week, I felt great. Bloated sure, but great. I was happy. I went shopping and bought way too many clothes. I explained to Yan later that this was due to the increase in estrogen levels (although it also could have been due to the fact that the Summer ’17 collection at Joie was pretty cute this year 🙂

    The next week things quickly went south. My mood tanked. The smallest annoyance or frustration would cause me to break down and cry. While I was completely in love with Yan the week before, this week I wanted to murder him. Poor Yan. Even Sonya noticed the drastic mood shift. To this day, she continuously asks me “Mama are you happy?” I wish I could have hid my emotions better.

  3. The retrieval especially was tough. This was the first time I had gone under full anesthesia, so I didn’t know what to expect. I cried as soon as I woke up from the pain. The nurses administered some kind of narcotic that helped. I was up and walking a few hours later but still incredibly sad. It took about two weeks for the hormone levels to stabilize. Worse still was the fact that I was bloated for a month after retrieval. I looked six months pregnant and felt I had nothing to show for it.
  4. The odds are not in your favor. At my retrieval, I was thrilled to learn I had produced 23 eggs. An excellent number. Of those, 19 were successfully fertilized, nine embryos survived the five day mark, and a month later learned none – not a one – were normal. As you can imagine, we were heartbroken. I blamed myself. I thank God that I had such amazing support from Yan, my family (especially my mom and Yan’s mom who both flew to New York to take care of us during the cycle and after the retrieval), and above all, a beautiful and smart Sonya already in my world. I don’t know how I would have coped without them.
  5. A healthy pregnancy truly is a miracle. The most important takeaway for me was the realization that while healthy babies are born every day, each one is truly a miracle. I don’t think I truly understood that until enduring a failed IVF cycle. I’ll never forget it.

 

In much happier news – Sonya is now riding her scooter like a pro! Even better, the Bern helmet is awesome. She hears everything with it!

 

Hearing Loss and Cerebral Palsy: What Parents Need to Know

Sonya’s hearing loss is non-syndromic, meaning it has no other symptoms aside from hearing loss, but for many children this is not the case. Alex Diaz-Granados, an editor at Cerebralpalsyguidance.com (an amazing resource for parents of children with cerebral palsy – by the way) lives with cerebral palsy. He penned the below guest column, which resonated deeply with me, and I hope for you too. Despite a different diagnosis, parent education and connecting with other families has been critical for us – and it’s why I started this blog!

Hearing Loss and Cerebral Palsy: What Parents Need to Know
By Alex Diaz-Granados

Studies have found that the rate of hearing loss in children born with cerebral palsy can be as high as 13 percent. For parents, to find that your child not only has this neurological condition, but also has complications like loss of hearing, is a pretty big blow. Hearing loss is just one of the possible complications of cerebral palsy, but it is a common one. Here are some important steps to take after your child gets this diagnosis:

Learn everything you can about your child’s hearing loss
Knowledge is power and the more you know, the more you can help your child. Children with cerebral palsy who also have hearing loss have one of two types:

  • Conductive hearing loss means that sounds cannot get through the ear canal from the outer to inner ear. There is some kind of blockage or a problem with the ear bones. This is sometimes also called glue ear or otitis media with effusion because it often occurs with fluid buildup.
  • Sensorineural hearing loss occurs when there is a problem with the auditory nerve or the hairs in the inner ear.

Either type of hearing loss may range from mild to severe. Mild cases of conductive hearing loss may clear up, but may also be corrected with surgery. The damage that causes sensorineural hearing loss is permanent, but hearing can be improved with hearing aids and cochlear implants in many cases.

Talk to your pediatrician about treatment options and specialists
Reading up on everything you can about hearing loss is a great first step. Armed with that knowledge, you can then discuss with your pediatrician what your options are. You will likely need to take your child to one or more specialists, so find out what your pediatrician recommends and get started on appointments with audiologists, otolaryngologists, and others. The sooner you find out the kind of treatment your child will benefit from, the sooner you can implement it and help him hear better or learn to live with a hearing deficit.

Reach out and talk to other parents
Talking to other parents of children with hearing loss is so important in coming to terms with your child’s hearing loss and cerebral palsy. Reaching out for information and support from the people who have already been through what you are experiencing is so powerful. A quick search online will turn up support groups for parents and families of children with disabilities, including hearing loss. Join a group and start asking questions. You’ll get plenty of good advice, and more importantly, the sense that you can do this and that your family is not alone in this struggle.

Remember that your child is a child first
When you keep in mind that your kid is just a kid, like any other, you can better teach him not to let his disability define him. He may have hearing loss, but first and foremost he is a kid who will learn, grow, and explore. It’s up to you how you guide him as he grows, and how much emphasis you place on his disability. If you teach him not to be limited by it, he won’t be.

About the author:  Alex was born premature in a Miami hospital in 1963. He suffered irreversible brain damage when a nurse in the hospital’s maternity ward forgot to turn on the oxygen supply. He has overcome many physical and emotional obstacles. He currently serves as editor at cerebralpalsyguidance.com and as a freelance writer for Examiner.com.

Thank you, Alex, for sharing this valuable information!! 

How to Tell People Your Child Has Hearing Loss (And How to Respond)

We sat around a circle in a colorful nursery school classroom. Our babies in front of us, propped up on pillows. Sonya was only three months old at the time. My breasts throbbed in pain as I had plugged ducts once again – but this was not a breastfeeding support group — as desperately as I wished it were. I can’t help but find the humor in that I just wished I were with a group of strangers talking about my breasts!

No, this was “group therapy” for new parents of babies with various degrees of hearing loss.

“Hi, I’m Missy,” I said, louder than intended. “This is my daughter Sonya. She is three months old. She is profoundly deaf.”

Profoundly deaf. How silly I was. As if the term deaf didn’t already imply profound hearing loss, but I was new to this.

As a new mom to a child with hearing loss, I struggled to describe my child’s condition. While my immediate family knew, Yan and I had yet to tell any friends or distant relatives. My greatest anxiety at the time was how do I tell people Sonya is deaf when I had trouble saying the word “deaf” without falling to pieces?

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We decided to tell people one-by-one, or not at all. This was emotionally very taxing. I didn’t feel it was something I could say by phone, so we just waited until an in-person meeting naturally arose, and then tried to play it casual (which in retrospect, was very very awkward.)

“Yeah, so Sonya is actually deaf.” I told my good friend who had come over for brunch. 

“Oh,” she said. Her face expressionless. 

“Yeah, we were really shocked. But we are looking into her getting cochlear implants, which are really amazing.” My eyes filled with tears but I grinned through it. 

“Yeah – she won’t even be deaf then.” 

The conversation moved on. And I was devastated by how cavalier my friend’s response was to our situation. But the fact was, I had put her on the spot. She had no idea how to react (how could she?) In another instance, we had the opposite reaction.

“Sonya can’t hear.” Yan told his friend. “She has a genetic mutation. It’s pretty interesting actually, she will probably get cochlear implants.”

“I’m so sorry. I just can’t get over the irony,” his friend replied. “Two people who love music so much….”

It was kinda like he had twisted the knife. But we just smiled politely and moved on.

Now, these were just a couple terrible responses. We also received many very kind and warm and empathetic words of support, which I hold dear to this day. I wanted to relay the above experiences because a friend of mine took the opposite approach when informing friends of her child’s hearing loss.

She simply sent a mass email.

Her email was short, optimistic, honest and explicit. She didn’t delve into her heartache or fear, but she she also didn’t pretend all was hunky dory. Rather, she let her friends and family know that while her child is doing very well and is a great joy to their lives, they were born with profound hearing loss.

I think sending an email is wonderful solution. I came up with the below template in case it is helpful for parents out there.

Dear family and friends. 

Sonya is a very special baby, and the birth announcement can’t possibly say it all. We feel so lucky and blessed to be her parents. Sonya was born with profound hearing loss. We want to give you time to adjust to the news so you won’t feel the need to have an immediate response. We would love for you to meet her. She is intelligent, beautiful, bubbly and full of curiosity. We are very optimistic for her future as she is a likely recipient for cochlear implants, which will afford her the ability to hear most everything. We are still gathering information, but will keep you apprised. Please don’t hesitate to reach out.

Love, Missy and Yan

And for those out there receiving the news that your friend’s child has hearing loss, here are some tips on what to say and what not to say:

What Not to Say 

“I’m sorry” Any statement that contains pity was not pleasant to receive and didn’t convey the feelings I had about my child at all. I felt blessed from the moment Sonya was born.

“It could be worse” statements felt like the challenges we were only starting to understand were being minimized.

“I think this happened to you because you can handle it.” or “God gives special children special parents.” Implies that my child’s situation is so awful only I would love and care for her. Also, trying to explain to a parent why God did something is rarely helpful.

What to Say

I think congratulating the new parents is the most important thing you can say – because they deserve to be congratulated.

Offer to help. If you know of someone who has cochlear implants already, offer to connect them. We were taking Sonya to multiple appointments a day for months after her birth – so meals, offering to babysit, etc. are great ways to respond.

“She looks just like you.” I loved it when people complimented Sonya’s looks or behavior. Still do 🙂

Acknowledge the grief the parents are feeling. “I know I can’t take the pain away, but I wish I could.” Or, “There will be challenges but the love and joy will be so intense you will not be able to imagine your life without this little girl!”

 

 

Do you have other ideas on how to discuss hearing loss that worked for you? I would love to hear about them!

 

 

Could We See a Cure for Hearing Loss in the Next Decade? Scientists at Stanford Are Optimistic

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Sonya hanging out in her favorite place: The American Museum of Natural History. She already loves science 🙂

Sonya was born deaf, but she was also born into an amazing age where symptoms of hearing loss can be relieved. When she was just seven months old, Sonya was implanted with cochlear implants which provide her a solid range of sound – particularly within the vocal range. Because of this technology, she is learning to speak and listen (and at two-years-old is on par with her hearing peers in terms of speech and comprehension!)

While cochlear implants are an amazing solution – they do not cure hearing loss. For example, Sonya likely does not hear music as we do. She likely does not access the subtlety and grandeur of sound that we are afforded.

But imagine, one day, if there was a way to restore hearing loss — even for people who have cochlear implants.

Researchers at Stanford not only believe it is possible – but within our reach in the next 10 years. Imagine what that would mean for someone like Sonya? Someone who never had use of her ears. Imagine what it would mean for the nearly 48 million Americans who report some degree of hearing loss and the nearly 278 million people worldwide.stanford

This week, we met with Dr. Robert Jackler, the lead researcher at the Stanford Initiative to Cure Hearing Loss  and Dr. Stefan Heller (who runs Heller Lab at Stanford) and whose mission is to create biological cures for major forms of hearing loss. Unlike other institutions which are focusing efforts on improving the symptoms of hearing loss, Stanford is working to address the (main) underlying problem: loss of inner ear sensory hair cells.

Let me explain. We are born with thousands of hair follicles that live deep within the inner ear — inside the shell-shaped cochlea. These hairs transmit vibrations to the brain, which interprets those vibrations as sound.

For Sonya – who was born with a genetic mutation (Connexin 26) –  and is missing a necessary protein to grow the above hair follicles – the diagnosis of deafness seems intangible. But Dr. Jackler and his team believes such hair follicles can be regenerated. To do so, Stanford has pulled together researchers in four key areas: stem cell therapy, gene therapy, molecular therapy and targeted neural stimulation. In 2015, Stanford scientists discovered biological mechanisms that appear to play a role in the regeneration of cells in the inner ear. They have also been able to regenerate such hair cells in mice.

Dr. Jackler brought up one avenue of research, that is particularly compelling. Many children suffer from hearing loss because of complications at birth. Aminoglycoside antibiotics are given to babies (especially in developing countries) to prevent infection. Yet, for some infants, the use of these drugs can cause hearing loss. Aminoglycoside antibiotics can travel into the inner ear and kill hair cells. Stanford researchers across an array of disciplines are very close to developing a way to protect the inner ear, while still allowing the drug to kill bacteria – thereby saving the patient’s hearing. This development would literally save millions of babies from hearing loss.

To many, Stanford’s Initiative to Cure Hearing Loss might seem too challenging, too expensive, too far out there to fund. Investments in hearing loss technology including hearing aids and cochlear implants have been society’s focus – but I would urge people not to disregard such research. The future of all our ears depends on it.

Check it out: https://hearinglosscure.stanford.edu/

They also have an interesting blog where you can stay updated on their research: https://hearinglosscure.stanford.edu/blog/

 

How Does a Cochlear Implant Sound vs Normal Hearing? Barb Cole Shares Her Perspective

Our daughter Sonya was born deaf but with the help of cochlear implants, she now hears most everything we do, albeit differently. Unlike hearing aids, which amplify sound, cochlear implants bypass the damaged area of the ear, and stimulate the auditory nerve directly, using electrodes. The signals produced by the electrodes are then recognized as sounds by the brain. Since Sonya is only 22 months, she unfortunately can’t describe what it is like to hear with cochlear implants.

My family’s friend Barb Cole, however, can! Barb suffered from degenerative hearing loss, and received a cochlear implant in her retirement. In the following post, Barb shares her difficult yet fascinating story:

My Cochlear Hybrid Implant Story
By Barb Cole

In the beginning, I did not realize I had a hearing loss until a colleague told me I was talking very loudly on the phone. I was only in my mid 30s, but found the need to gradually increase the phone’s volume at work, so I could hear my clients.  I probably had hearing issues prior to this intervention and was not aware of them. I saw a doctor, who told me my hearing was borderline and that at this time I did not need hearing aids. 

Ten years later, I decided to get my masters in special education. I finally got hearing aids in order to work with my students (children are more difficult to hear than adults for me). For the next 15 years I taught special needs students. I loved it, but my hearing was declining and I needed to make a career decision for my students and for myself – and so I retired.

At that time, I had received new hearing aids, but they were not really helping, so I looked into cochlear implants. Unfortunately, I was told I would not qualify for the devices, because I still had some hearing. My hearing loss was mostly in the high frequency range. I became depressed and frustrated. I could not understand my grandchildren or people on the phone. My hearing difficulties affected my speech. I struggled with pronouncing words correctly – especially multi-syllable words. I needed help going into stores, seeing doctors and talking with friends, It was very disturbing and humiliating.

When we moved from Minneapolis to Chicago my life changed! My new doctor said I qualified for a Cochlear Hybrid Implant. I would be his second patient and I would participate in a Cochlear study. He was so positive and understanding. I had my operation in November 2015, which went very well (but recovery was very painful). I was connected with my processor in December. I feel like I am traveling a very long journey. The doctor says it can take up to two years to heal.

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Barb’s new cochlear implant

My brain needs to re-learn how to hear, so working with the audiologist has been extremely important. There were some misunderstandings during post-activation, because I was so used to writing everything down. I needed time to process information before I could understand it. My brain is not used to hearing, processing, and understanding at the same time. It turned out to be an adjustment for the audiologist too – I kept trying to slow her down and repeat important information. 

As my brain was trying to connect with my implant, I would hear loud chirping sounds – which is normal. This is the brain’s reaction to the new range of high frequency sounds (such as a child’s squeal or a police siren) that I am now able to hear. As the audiologist programs my processor, my range of sounds have been expanding – this is done slowly. The chirping sounds are annoying, but as the brain adjusts then they begin to fade – until new sounds are introduced. The radio, tv, and other electronic devices tend to have high frequencies, which causes more chirping sounds.   

My brain is still learning to work with my implant. I do two hours of hearing homework a day – it’s exhausting. Homework includes listening to audio books and following along with the printed books. I do hearing games and exercises on my iPad and computer. My husband reads to me and I read to him. I listen to the TV, radio, etc., with captions, as I need to hear different sound sources in order to make the connection in my brain. 

Over the last six months, there has been much testing and adjusting. This past June was my six-month post-activation check-up. I received the best news. My hearing is now in the normal range (at the bottom but in the normal range) under perfect conditions. The chirping sounds had lessened, which meant my brain had successfully adjusted to the frequency range. The audiologist then expanded the frequency range enabling me to hear more sounds. 

One of the hardest adjustments has been dealing with people. I still need people to look at me, talk a little slower and clearly, so that I can hear and understand them. Loudness is an issue. While, I can adjust my devices for volume, when people talk too loudly the sounds I hear are distorted. I have thus lowered the volume of the TV – a big improvement. It is a bit easier to listen on the phone, but there are many variables: articulation, fluency, distortions, pitch, accents, and background noises. My pronunciation has greatly improved, however. I can now hear the difference in how I pronounce words and the correct way they should be pronounced.

Overall, I am glad I have the implant/processor, but it is a huge commitment and adjustment. Today I can hear birds and insects – even other people’s conversations!

Thank you, Barb!! 

The Fear of an Ear Infection

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Sonya’s right ear, which had developed an infection at the mastoid

A couple weeks ago, Sonya developed an ear infection. It may have started on the way home from our vacation. As the plane descended, Sonya screamed in pain. “Ee-ya!” she said, pointing to her right ear. She seemed fine once we landed, however. I didn’t think much of it.

A week later, Sonya had developed dark red circles under her eyes. They looked irritated, so I tried to use a warm compress on them a few times a day. It didn’t help. A day later, Sonya developed red dots across her cheeks and neck. She would hold her ear and cry “ee-ya, ee-ya!”

The pediatrician saw redness in her ear, but nothing more. It was only in the ear canal, so he gave us Cefdenir, an antibiotic, and drops. I felt relief knowing that we had caught the infection early.

The next morning, as Sonya played in her room, I noticed her right ear was sticking straight out of her head. The infection had spread. I immediately called her pediatrician’s office. A nurse told me to contact Sonya’s surgeon.

While ear infections are one of the most common ailments among young children, kids with cochlear implants are at higher risk for complications. Major infections may have serious consequences, as infections in the ear can (in rare cases) move to the surgical site. While rare, such infections occur more frequently in pediatric patients according to a recent study.

Sonya’s ear infection had spread to her mastoid, which is the back part of the temporal bone. By the time our surgeon looked at it, gunk was coming out of her ear. Thankfully, the surgeon changed her prescription to Augmentin, which is a more comprehensive blend of antibiotics. Within a week, the ear was back to normal.

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Sonya’s right ear, a few days later. Still sticking out but not red.

Today, Sonya is doing great, and the infection seems to have cleared completely. That said, the experience helped me realize that while Sonya may seem like any other kid, she unfortunately, is more prone to complications arising from infection and if we are not vigilant, things can go south quickly. It was very frightening how quickly what seemed to be a mild ear infection moved to her surgical site.

From this experience, I plan to purchase an otoscope. While I can’t diagnose an ear infection, I can at least see what a healthy ear looks like and it will give me piece of mind to be able to see into Sonya’s ear when needed.

Update: We recently visited Sonya’s surgeon. He suggested that Sonya get her Pneumovax 23 vaccine before our trip to Europe  at the end of the summer. This vaccine is typically given to kids with CIs around their second birthday, but he didn’t see a downside with her getting it a month earlier. Our pediatrician agreed. As for the otoscope, Sonya’s surgeon did not recommend one. He said that we could actually do more damage to Sonya’s ear by probing too far in by accident.

Peppa Pig Saves the Day

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For weeks we struggled with Sonya’s persistent desire to remove her CIs. Nothing seemed to work. Nothing, that is, until in desperation we turned on our computer and let her watch Peppa Pig on YouTube. Sonya was immediately transfixed. Maybe it was the bright colors, the cheeky anthropomorphic animals, or the simple drawings. It might have had to do with the fact that one of Sonya’s first toys was a stuffed Peppa Pig doll. Whatever it was, Sonya wanted to hear this show. She pointed to her ears and sat still so that I could put her processors behind them.

This approach has worked 100 percent of the time. Even better is the fact that she is taking her processors off less often.

Our speech therapists have rallied behind this development. We incorporate Peppa and her family into speech therapy. Using a Melissa & Doug Wooden Doorbell House, we place a member of Peppa’s family inside each of the four doors. From there, Sonya must say “Hi Peppa Pig” or “Hi Mummy Pig,” etc.

Though I am happy we found a solution, I was initially disappointed to find that videos were the key to keeping Sonya’s processors on. I felt like in some way I had failed her. That I was taking the easy way out. I didn’t even want to admit to it on this blog. I worry that I may have opened Pandora’s Box. Perhaps Sonya will realize that I have no Plan B and will simply take her CIs off whenever she is in the mood to just zone out and watch TV.

While we are not a family that has forbidden screen time, we have tried to limit it. We allow Sonya to watch TV for about 15 minutes in the morning before breakfast and when we are driving to therapy and back. I am trying to phase out mindless videos and focus on interactive iPad games such as Daniel Tiger, Peek-a-Boo Barn, Toddler JukeBox, and My Very Hungry Caterpillar instead. I think that most everything in moderation is okay, and that some screen time that serves a purpose is okay.

But I have decided to be less harsh on myself. I’ll cross the above bridge if/when I get to it. For now, the importance of her being connected to the world of sound outweighs the potential negative side-effects. Including the fact that the theme songs to Peppa Pig seems to be burned in my brain.

On the other hand, how adorable would it be if Sonya learned to speak with a British accent?!

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