Month: June 2017

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!! 

Hearing Loss and Helmets

For young New Yorkers, a scooter is a rite of passage. Walk down West End Avenue, and you will inevitably see a two-year old child (or younger!) careen by in one. Their hands holding the handrails tightly. Their mouths frozen in a smile that borders hysteria; intense fear in their eyes.  Years ago, I swore to Yan that we would never get one for our future child.

Fast forward to this past Spring. Sonya (seated in her stroller) would point at children on scooters on our way to school. “I want that!” she told me. “I want a purple one!”

“Uh huh,” I said. Trying not to encourage it.

“Mom!” Sonya’s eyes lit up. “We can go buy one at the store!” It wasn’t a demand as much as a realization.

A week later, I gave in (yep…I know….judgers gonna judge). We went to West Side Kids toy store, and Sonya picked out the scooter of her dreams. She was so thrilled she rode it out of the store.

Here she is enjoying her first ride:

West Side Kids only had a limited selection of helmets. We went with a Nutcase helmet – mainly because they were cute (again…I know). Sonya picked one out with pink and orange flowers. The sales person removed some of the styrofoam protection on the inside, so that the coils of her CIs would not fall off as soon as we put it on.

Unfortunately, the helmet didn’t work. It either hung too loosely (and would knock of her CIs every time she turned her head) or would be too tight to put on with the CIs comfortably and without sliding her headband down her forehead in front of her eyes. It was also impossible to tell if the CIs were working or not. The helmet blocked me from seeing the front of her processors (which blink green if the CIs are working and yellow if not).

After a couple falls we put the scooter away. Sonya didn’t want to ride it anymore, and I didn’t want her to either – not until we had a solution that didn’t involve her riding without a helmet or without sound.

Per the advice of a friend (who’s son faced a similar dilemma), I took Sonya to Bicycle Renaissance to see if they could fix her helmet. After careful inspection, the salesman told me the Nutcase helmet was just not right for her. She needed something bigger with a flexible inside so that we could adjust it to fit her CIs. He suggested a Bern.

I bought Sonya a Bern Unlimited Jr. helmet from Amazon. I love it so far. The main positive is it has a velcro strap in the back that easily allows us to customize the fit to her head – with the CIs on. I can easily see the CIs blinking on her ears (as the helmet rests a bit further back on her head), and yet the coverage is still very good (with a sun visor no less). Sonya loves the bright pink color and wears it when we are home for fun. Win win!

 

Today, Sonya talks frequently about her scooter. She points to it proudly and declares “that’s mines!” each time we get out of the elevator to our floor as it sits in our hallway outside of our apartment. Unfortunately, she isn’t yet feeling up to riding it (and we aren’t pushing her to do so). She is a pretty cautious child after all, and a couple of those falls weren’t pretty. That said, I feel better knowing that at least we have a helmet that fits in the event she decides to give it another whirl (that is until she outgrows it…. I guess we have a couple months :).

What to Expect When You’re Expecting A Child With Hearing Loss

Today, more parents are learning that their children have hearing loss earlier than ever before. According to the NIH, about 2 to 3 children of every 1,000  in the United States are born with detectable hearing loss in one or both ears. And more than 90 percent of those cases are born to hearing parents.

For parents like us, who have children born with profound hearing loss, here is what you can expect that first year once they fail their initial hearing screen at the hospital:

Genetic testing: Because Yan and I are both Jewish of Ashkenazi descent, we did a Counysl prenatal screen when I was about 10 weeks pregnant. At the time, it was an annoying inconvenience, but in retrospect, it was the most important test of my life. The test confirmed before Sonya was even born that Yan and I were both carriers of a non-syndromic hearing loss gene (meaning no other symptoms aside from hearing loss) called Connexin 26. It was devastating news to receive while pregnant (I discuss receiving the call from our doctor here), but it gave us the information we needed to move forward quickly once Sonya was born and had failed her hearing screen.

In addition to us taking the Counsyl test, Sonya also received genetic testing when she was 14 days old to confirm the cause of hearing loss. This was not an easy time to say the least, but I am grateful we accomplished it so early.

Auditory Brainstem Response (ABR): A more sophisticated way to diagnose hearing loss conducted by an audiologist. For an infant, this is a long – but painless test – which measures the reaction of your child’s auditory nerves to sound. It is safe and it does not hurt your child. For babies younger than six months, it is done while he or she naps. Sonya did an ABR test twice when she was about two weeks old. 

At this point, Sonya was diagnosed as deaf. We received loner hearing aids immediately from NYU.

Evaluations to determine candidacy for Early Intervention and the Deaf Infant Program: Soon after Sonya failed her ABR, I contacted Early Intervention. The Early Intervention is a state-sponsored program that supports families from birth to three who have disabilities or developmental delays. The first step is for the child to be evaluated. A case worker came to our apartment and asked us basic questions, and at that point determined Sonya would be a candidate for EI services.

The next step took place at the Center for Hearing and Communication in Manhattan. We made the schlep downtown (the first of many) and had her evaluated by speech therapists and audiologists. The process took a few days, but ultimately, it was decided that she was also eligible for the Deaf Infant Program, a privately funded program that provides speech therapy services (and transportation to and from a speech therapy center) for children with profound hearing loss in New York.

Lots and lots of speech therapy: Sonya started speech therapy through Early Intervention and the Deaf Infant Program at three months. This included two to three 60 minute individual speech therapy sessions a week and a group therapy session. She also received her own pair of hearing aids through Early Intervention.

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Speech therapy at approximately six months


Evaluations to determine candidacy for cochlear implants: At four months, we took Sonya to NYU’s Cochlear Implant Center where a team of audiologists and speech pathologists determined after numerous tests and evaluations that Sonya would be a good candidate for cochlear implants. We also met with Dr. Tom Roland, the surgeon, around that time – who gave us a bit more information about what the surgical process.

MRI: While all other evaluations pointed to cochlear implants as having the greatest benefit for Sonya, Dr. Roland required an MRI to be conducted to ensure the anatomy of Sonya’s ears were suitable for the devices. It’s never easy to put your baby under anesthesia, but after two failed attempts at CT Scans, I was game. The MRI gave the doctor a detailed view of Sonya’s ears, and it gave us a glimpse at what the surgery day would be like as it took place at the same hospital and prepped us for what it would be like for Sonya to go under anesthetic.

A few days later, Sonya was cleared for the surgery. We scheduled it for when she was seven months old.

Choosing a device: Many families struggle with the decision as to which device is best for their child. Between Advanced Bionics, Cochlear and MED-EL, the choice is not always clear. We opted for Cochlear because the internal component was the smallest and the newest at the time (2015). That said, I know many families who went with Advanced Bionics and have been very happy with their choice. Ultimately, all of the companies have great reviews and there is no research I am aware of that shows one device has better hearing results than the other.

In addition to the brand, you will also need to choose the color of the processor and coil. Parents usually go by hair color. We went by skin color because Sonya had no hair at the time.

The surgery: See my post on Sonya’s cochlear implant surgery here.

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One day post surgery. Sonya bounced right back! We took off the bandage the next morning.

Activation: Two to three weeks after the surgery, the cochlear implants will be activated. This is the first time your child will hear. Check out my post on Sonya’s activation here – which includes videos of the actual activation of the devices.

As you can see, the timeline is not easy. But then, THEN!! you will have a little one who hears! I am tearing up watching this old video of Sonya who couldn’t yet speak at less than a year, but definitely could hear!

And before you know it, a couple years have passed and she is talking on par or ahead of her hearing peers. Thanks speech therapy!

 

 

 

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!