Category: Uncategorized

Have You Heard of Yoga for Hearing Loss?

Check out five yoga poses that help kids with hearing loss!

Sonya perfecting dhanurasana pose at ‘Lil Yogis in New York City

Have you guys heard of yoga for hearing loss? When Sabine Hobbel learned her son Aidan, now five, was born with hearing loss, she looked to yoga as one way to help him. Sabine created Little Light Yoga and Movement, an online yoga program for kids with hearing loss between the ages of four to eight years.

“Hearing loss isn’t just about the ears,” she told me in a recent video call (Sabine lives in Milan, Italy). “There are so many areas impacted: balance, fine and gross motor skills, focus and attention, reading skills and eye strength as well as self esteem. These are all areas that can be improved through yoga.”

Sabine, a former elite field hockey player in the Netherlands and Australia, turned to the healing properties of yoga after years of the sport took its toll on her body. She was certified as an instructor in 2017.

“While I mostly practice Hatha yoga, I adapt it for kids,” she says. Sometimes parents imagine this zen environment — which seems unrealistic for young children — but this is not my yoga. During my sessions there is a lot of laughter, jumping and being silly. I don’t care about perfection. Rather, we focus on breathing and what is happening in our bodies. It doesn’t matter how flexible your little one is or their body type. Yoga is for everyone.

“If you present yoga in a fun way, kids are happy to do it and the benefits will come without them realizing it. ” – Sabine Hobbel

What does yoga for hearing loss look like? Check out Sabine’s favorite yoga poses below: NB: Before starting, as with any physical activity, make sure your child feels warm enough to start some yoga. Dancing to their favorite song, star jumps or running on the spot are great ways to warm up.

Crab Pose: Great for gross motor, balance and focus

Invite your child to sit down on the ground on their bottom; palms of hands flat on the ground on either side next to their bottom, fingers pointing toward the toes. Feet are flat on the ground, knees are bent. Whenever your child is ready, let them push off slowly into hands and feet, lifting the bottom as far up as feels right. The neck can be relaxed or they can look toward their toes. Eyes can be open or closed, whichever feels right. Allow your child to come out of the pose when it is right for them in the exact, slow manner as they came into it.

What will my child look like doing this?: Most kids will look like an “M” when viewed from the side, with their bottom hovering close to the ground. Some children will manage to lift up their bottom very high, making a 90 degree angle in the knee and in the shoulder joint, looking almost like a table. Other children won’t have the strength to lift their bottom up, but their body is still working hard in the attempt to do so. All versions are right and a cause for celebration. Allow your child to explore in the way that feels right for them.

Additional challenge: If it feels right today, walk while in crab pose. This takes a lot of extra strength, balance and focus. Applaud any attempt, no matter the outcome. As always, communicate so that your child has the best possibilities of understanding you (e.g. use their FM, tap them first, make sure your mouth is visible, etc.).

Candle Breath: Great for focus, fine motor skills, emotional regulation

Depending on your child’s current level of tiredness, you can sit either in criss cross apple sauce (or similar) or remain standing. Hands are flat and palms are placed together, about one hand distance away from the mouth. We’re pretending that we’ve got five different candles right in front of us on a birthday cake. It’s a special cake, and the candles can only go out one at the time, and only if we take nice deep breaths in and out. After the first deep inhale and exhale, fold the thumbs over each other and say “one”. The next deep inhale and exhale, fold the index fingers while saying “two”, and so on until all five candles have been blown out.

What will my child look like doing this?: Most kids are calm while they attempt this activity. Many need some modeling initially of how to fold the fingers, especially once you reach the ring and pinky fingers. Some children will close their eyes while they breathe, this is fine. Some children will need a reminder that only deep breaths will work on these special candles, rushing to blow out the candles will actually not count for this activity (and will not help them to feel calm). There are some children for whom this is a hard activity as they get fidgety. Allow those children to stand while they try this pose. You might be surprised that after trying this pose for a number of consecutive days, they will be able to stay calmer and less wiggly for the duration of the exercise.

Additional challenge: Let your child blow out the number of candles for their next birthday, so that an eight-year-old will have to blow out nine candles. I generally don’t recommend including more than 15 candles in any one session, as this is a lot for most children, but you know your child best.

Pro tip: Tell your child that it can be a great idea to blow out candles whenever they face a tricky situation, as it can help them stay calm and in control. Real life examples include: when asked to share a favorite toy with a sibling; when asked to stop playing video games; and before wax removal at the doctor’s office.

Flamingo pose: Great for balance, gross motor, focus

For this pose, stand up tall on two legs. We’re going to balance on one leg just like a flamingo, so shift your weight onto one foot. Your child can have their arms outstretched to the sides for extra balance. Remind them that they can always place the feet back on the ground to feel stable again. Now slowly let them lift up their leg and foot of the leg towards the front, so that the knee bends in front of them. When they’re done, have them place their feet flat on the ground again. 

What will my child look like doing this? Most children look very wobbly when first attempting this, and that is absolutely fine. Remind them that it is ok to step back on the ground when they feel like the balance is out of control. Most children will be able to lift their foot somewhat. Other options include keeping the toes of the foot that needs to be lifted on the ground, or initially holding on to the adults hand when trying this. Some children will attempt to lift their foot very high, nearly reaching a ninety degree angle of their knee, or they might get their knee up even higher. As always, all versions of the pose are worthy of celebration, we’re not looking for a specific outcome, the practice is all that matters. This pose challenges their abdominal and leg strength in whatever version your child tries it. To try to stand still without falling means that they are very focused and using their balance skills.

Additional challenge: If your child feels stable while standing like this, let them move their arms like flamingo wings! Some children will like to hold hands while attempting this, that is fine too.

Pro tip: Tell your child that it gets easier to maintain their balance if they focus on one, unmoving spot on the wall or floor. Once your child is not wobbling anymore, invite them to feel their breathing in their body.

London Bridge: Great for focus, balance, gross motor skills, eye strength

Let your child lie down on their back, with their feet as close to their bottoms as possible. Feet should lie flat on the ground with the knees bent. Then, have your child lift their bottom up as high as possible, so that only their head, neck, shoulders, arms and feet are touching the ground. The back, legs and bottom are all up in the air. Your child is going to move to the song “London Bridge” which you can sing or find online. Every time they hear the word “down,” it is time to move the body downwards, and immediately up again. Some children can lie flat on the ground, others just move slightly down and up. Whatever is possible, is right today. 

What will my child look like doing this?: Your child will have their bottom lifted as far as feels comfortable. Some children will still touch the ground with their bodies even when they have their bottom lifted due to body size and fitness levels. That is ok, just as any child who is able to lift their lower body completely in the air. Most kids will tire out before the song is over and will be less active towards the end of it, others will be able to complete the song easily. All versions are fine. Many kids will giggle during this silly version of London Bridge.

Additional challenge: If your child completes this song easily, see if they can do the same with one foot lifted in the air! This means that they are balancing just on one leg while lowering themselves and lifting themselves up again. 

Easy Relaxation: Great for focus, emotional regulation

Invite your child to lie flat on their back or belly, whatever feels right at that moment. If your child can understand you with their eyes closed, they can close their eyes straight away, if desired. If not, explain what you’ll do before they are allowed to close their eyes. Explain to them that we are pretending to be ice cream melting in the sunshine. So we’re going to become really aware of the different body parts (you can name or touch them gently, starting from the feet), allowing them to become very heavy, still and ‘melting’ into the ground. Go at the pace your child enjoys, some children can relax like this initially only for a few seconds, others can go up to five minutes and enjoy this blissful state of calm. You can see what feels right for your child today, do not force anything. Longer is not better if it doesn’t feel right. Whenever you feel your child has relaxed for long enough or is unable to continue for whatever reason invite them to roll onto their sides, slowly sit up and take a deep breath in this sitting position showing a big smile if that feels right. Yoga is finished for today! 

What will my child look like while doing this?: Many children feel calm in this pose. About half enjoy closing their eyes, the other half prefer eyes open. That’s all fine. Some children with tight hamstrings will not enjoy having their legs long, but will bend their knees, that is absolutely ok. Many children will automatically move to belly breathing in this pose (also unprompted): showing an inflated belly when inhaling, and deflating it when exhaling.  

Pro tip: Tell your child that it is great to think about melting ice-cream when trying to fall asleep at night.

Looking for more? Sabine has created three online yoga programs for parents to consider:

Sound of a Smile: This online course was developed for children with hearing loss, ideally targeting kids between the ages of four and eight years, the course runs eight weeks and can be found here. Cost: €56.

Yoga for Resilience: This unique course can be enjoyed in two ways: (1) Children can do yoga with the videos Sabine made for them. If desired, parents can choose to watch the explainer videos, which explain why the course is structured in this way. (2) For parents who want the benefit of yoga without the screen time, Sabine has developed videos that teach the parents exactly what the moves are for every week, so that parents can act as teachers. In this case, parents do not show the yoga videos to their children. Yoga on Demand runs eight weeks. Cost: €200 for our readers.

Yoga on Demand: Sabine will conduct an intake interview to learn about your child. She will then send two initial video sessions between 20-30 minutes in length for your child to practice (with parents, if desired). In two weeks time, a follow-up call will take place to evaluate progress and make any necessary adjustments after which you will receive one video per week tailor-made for their child. Every two weeks, you have the option to talk to Sabine again, so that changes can be made and new poses can be introduced. The course runs eight weeks and costs €200 for our readers.

To express interest and for this reduced price, email sabine.littlelight@gmail.com and mention “Sonya Rose.”

Thank you, Sabine! Sonya and I can’t wait to do some yoga!

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.
Our hood
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

Some Big Changes

London calls

For the past six months (since my last post), a lot has happened.

First, I got pregnant! The second round of IVF worked! I am currently 31 weeks and so far everything is going well! As soon as Sonya learned about the baby, she told her teachers that her mommy was making her a baby. 🙂 Every night she talks to the baby and kisses it.

My lack of posting during this time, was partly due to the fact that I had a rough first trimester. I had to give myself progesterone shots in the rear every evening for 13 weeks. Sonya insisted on watching (she is my shadow after all…) and I’m pretty sure she thinks babies come from needles at this point. I don’t know if it was the pregnancy or progesterone (or both), but the morning sickness made it difficult to do very much at all. Thankfully, by my second trimester, everything settled down and I could resume my life.

Just as I was feeling better and my nesting instincts kicked in, we learned that Yan got a new job and we would be moving to London! As you can imagine, this was equally exciting and terrifying. Sonya was already accepted into a great school in NYC, which we were thrilled about. We had her speech therapists, ToD and reading classes in place. She was thriving. Obviously, making a decision to uproot your child at any point is not one anyone takes lightly.

On the other side of the equation was the amazing opportunity. Yan and I both spent quite a bit of time in Europe before we met (I studied in France and he lived in Amsterdam for two years post-college). The notion that we could so easily travel within Europe (and expose Sonya and her new sibling to new cultures, languages, etc.) was thrilling. It was something we had always wanted to do. We know these opportunities are rare.

So, today, I write to you from our new (temporary) home in Kensington, London. We plan to move to a permanent flat in mid-May.

Given the life changes, I think this blog will be somewhat redirected. While Sonya has thrived in speech therapy in New York City, we are learning that services here are not the same. My subsequent posts will be about the obstacles we faced and continue to face as we maneuver a new system, which has its own pros and cons compared to what we were used to.

If anyone reading this is in Central London, do let me know! Would love to hear your experiences raising kids with hearing loss in this new and beautiful city we are so excited to call home.

xx

Missy

 

Some Thoughts As We Start Another Round of IVF

A year ago, I wrote a post about IVF. We had gone through a failed round and I wanted to share our experience. At the time, I thought I could just jump back on that wagon and try again. Unfortunately, life didn’t work out that way.

One thing that stuck with me post-IVF was a disconnect with my body that I had never experienced before. The bloating I experienced after the egg-retrieval, coupled with hormones that made my appetite crazy (not to mention my mood), culminated in a body that I didn’t recognize. I was furious. Not only did we not get any embryos, we spent thousands of dollars, and worse, I was back to a body I had worked so hard to change after Sonya was born.

Every morning, I would push Sonya to school in her stroller. A 20 block hike down West End Avenue. Half of which is uphill. I would think about food. After drop-off, I would go to a yoga or pilates class. Drink loads of coffee (to quell the appetite), and then pick Sonya back up and walk her home. By 2 p.m., I was literally starving. I remember crying on that hike back up hill because I was so frustrated and tired and hungry. Sonya would be kicking in the stroller because she wanted to go to the park, or walk alongside me. I was so fixated on getting home so that I could eat, that I kept on pushing. Ignoring her requests.

I quickly lost the weight. I also lost my period and my desire for life. I lost precious time I could have used enjoying Sonya and Yan’s company.

Despite being born with hearing loss, Sonya hears just fine with her CIs. She is also extremely observant. “I will eat just one more cracker,” she would declare, her eyes fixated on me for approval. How devastating to hear this! But it also was a wake-up call.

My behavior was not serving anyone. Not myself, not Yan and certainly not Sonya.

Thank goodness, I have rebounded. I gained the weight back and I also regained my happiness. I started to listen to my body instead of the crazy and destructive voices that seemed to be real, but were in fact, just thoughts.

Sonya recently asked me why my belly was so big after eating dinner. “Do you have a baby in there, mama?” she asked.

“I have a food baby!” I told her, as brightly as I could. “And I am going to rub it and kiss it.” I kissed my fingers and rubbed my belly. “My food baby helps me be strong! It gives me energy so I can run and play with you!”

“Mama, I have a food baby too! See?” Sonya lifted her shirt to show me her little tummy. We rubbed and kissed our bellies together.

In the coming weeks, I will start another round of IVF. I think knowing how I react to this treatment will be helpful. I am also hopeful that this time, it works. In the meantime, I will continue to listen to and feed my body; observe the thoughts that fill my head; and be mindful of the words that come out of my mouth. It’s not just me who is hearing them.

xoxo

 

A Comedy Night Jokester

We are so excited for this year’s Comedy Night fundraiser, which benefits the Center for Hearing and Communication! To celebrate the 32nd year of classic New York comedy accessible to people of all hearing abilities, enjoy this video of Sonya telling her first joke! 🙂

Does your child have a funny joke to share? Submit your own video here (and donate to a very worthy cause that is close to my heart).

 

 

 

 

Check out the Present and Future of Hearing Loss Research

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Recently, Yan and I had the opportunity to visit the Stanford Initiative to Cure Hearing Loss (SICHL). Not only did we get to tour the research facilities, but we sat down with several world-renowned researchers who are on the cutting edge of curing hearing loss.

Basically, SICHL’s goal is to create treatments that repair the damaged inner ear and restore lost hearing, quiet tinnitus and improve balance. Stanford believes that hearing loss can be corrected and avoided. I strongly encourage other parents to follow their research and blog!

In particular, take a look at the following posts. These will help you to understand what the key areas of hearing loss-related research that Stanford is investing in currently, and what their goals are for the next five years:

Grillet Lab: Nicolas Grillet, PhD is focusing on a gene called Loxhd1, which is responsible for a non-syndromic form (i.e. no other symptoms) of hearing loss. His team is using mouse models to study the effects of different mutations in this gene.

Oghalai Lab: John S. Oghalai, MD has been studying how sound vibrates the hair cells within the cochlea, and how the loss of some of the hair cells affects the ability of the rest of the hair cells to work. Dr. Oghalai’s work will help to develop more effective treatments for patients with hearing loss and better hearing aid and cochlear implant programming algorithms. Notably, they have developed a way to image the cochlea in animals in a non-invasive way. They are hoping to do the same for human patients so that we can learn exactly why an individual has hearing loss!

Cheng Lab: Alan Cheng, MD lab has made major discoveries in the areas of cell regeneration. His lab has established one of the first models of mammalian cochlear hair cell regeneration (which before his lab was understood not to regenerate in mammals). His lab studies several models of mammalian hair cell regeneration and also has the ability to determine whether regenerated hair cells function as normal hair cells.

Dr. Cheng’s lab has also focused on ways to prevent certain types of antibiotics known as aminoglycosides from causing hearing loss. They are working to create non-toxic antibiotics in the next five years.

This is just a sample of the areas of research happening at Stanford. You can learn more about their ongoing investigations and goals here.

Do you follow any research you would like me to include here? Please let me know in the comments section!

 

Shivani Nazareth of Counsyl on Why Carrier Screening is Critical for Couples

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When our OB recommended an expanded carrier screening in the early weeks of my first pregnancy it was an annoying inconvenience. Today, I see it as the most important test of my life. Ten weeks into my first pregnancy, my husband and I learned that we were carriers of a non-syndromic hearing loss gene (GJB2). By the time my daughter was born and failed the newborn hearing screen we were of course devastated, but we were also prepared. Having genetic results gave us the confidence to get hearing aids for our daughter at one month of age, despite recommendations from established ENTs who suggested we hold off another month or two. It gave us the information necessary to advocate for our daughter her first week of life and because of this, we secured a cochlear implant surgery at just seven months of age. At three years old, our daughter is speaking and hearing on par or ahead of her hearing peers. Her successful outcome in our opinion is a direct result of us having had the expanded carrier screen. It gave us critical information earlier so that our daughter could hear earlier.

On that note, I recently had the pleasure to connect with Shivani Nazareth, MS CGC, Director of Medical Affairs at Counsyl, a DNA testing and genetic counseling service. For more than 15 years, Shivani has worked with thousands of couples to help them understand how genetic screening can help them make informed decisions when building a family.

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Can you talk a bit about what carrier screening entails for couples who are pregnant?

Sure! To clarify, it is ideal that carrier screening be performed before conception, rather than during pregnancy, as timing makes a huge difference in allowing couples to utilize the information to their benefit. It is performed on a sample of blood or saliva, from which DNA is analyzed to determine if an individual is a “carrier” of a genetic disease. Carriers are healthy people with an alteration, also known as a mutation, in their DNA. The test includes a wide range of conditions, from hearing loss to chronic or life-threatening illnesses. If a pregnant woman is found to be a carrier, the next step is usually to test her partner’s DNA. This is because both mom and dad would have to be carriers of the same gene (with few exceptions) in order to conceive a baby with the condition. While this may initially seem like unwanted information, the purpose of carrier screening is to identify potential health issues as early as possible, thereby giving couples time to research all options and improve the likelihood of having a healthy child.

What are the main misconceptions that prevent couples from doing carrier screening?

Lack of family history seems to be the most common misconception about carrier screening. In other words, people mistakenly believe that if they have “nothing in the family,” they do not need carrier screening. In reality, most babies (>80%) with rare inherited diseases are born to parents with absolutely no family history of the disease. Rather, there can be many generations of healthy carriers in a family who just never happened to pair up with another carrier. Parents are often surprised by the diagnosis, which is why carrier screening should be considered by all of couples of reproductive age.

Can any couple do carrier screening? Or, do you need a preexisting condition (or a heritage that warrants extra scrutiny – I.e. Ashkanazi Jewish)?

Yes, any couple can do carrier screening and every couple should consider it. While certain inherited diseases are more common in the Ashkenazi Jewish population, this doesn’t mean that they do not exist outside of that population. In fact, nowadays most babies with Tay-Sachs disease, a traditionally “Jewish” disease, are born to parents with no known Jewish ancestry. A study published by Counsyl in JAMA last year showed that expanded carrier screening is more effective than ethnicity-based screening at capturing at-risk couples. Expanded panels, like the Counsyl Foresight Screen, can include over 100 rare but serious diseases. Those who get the information upfront can better manage their risks and consider alternative reproductive options. For example, some pregnant women benefit from additional ultrasounds during pregnancy, fetal cardiac tests, consideration of diagnostic testing, or initiation of early intervention and/or treatment in the newborn period. Sometimes a simple dietary modification can prevent disease onset. For those who obtain the information prior to conception, there is also the option of pursuing fertility treatments and only using embryos that are unaffected. While all of this can seem overwhelming at first, we are fortunate to live in a world where we have access to such great advances in modern medicine— and ultimately some element of control over the outcome of our children’s health.

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What are some of the genetic causes for hearing loss that Counsyl tests for? 

As you’ve openly discussed, your daughter Sonya inherited GJB2-related DFNB1 nonsyndromic hearing loss. GJB2 encodes the protein connexin 26, which is needed for the proper formation of the cochlea, or the auditory portion of the inner ear. This type of hearing loss is recessively inherited, which means that both parents must be carriers of this gene in order to have a child with hearing loss. As you and Yan know, being a carrier does not impact your own hearing in any way. This is because genes are inherited in pairs, and you each have one copy of the gene without a mutation. Sonya, on the other hand, inherited two mutations—one from you and one from Yan—and therefore was born deaf. There are a few additional genes on our carrier screen panel that are associated with partial or complete hearing loss. They include Usher syndrome and Pendred syndrome. The word “syndrome” indicates that the hearing loss is one of a few different symptoms that are inherited together; for example, children with Usher syndrome have both hearing and vision loss. A full list of diseases included in the Counsyl panel can be found here.

How much does genetic testing typically cost and does it depend on the level of testing? How much is covered by insurance? Do you need a referral from another doctor?

Carrier screening is one of a few different genetic tests offered during pregnancy. It is covered by most health plans. At Counsyl, the test can only be ordered by your doctor, but it doesn’t require a referral to another specialist. Since insurance plans and deductibles vary, Counsyl offers a personalized out-of-pocket cost estimate within 48-hours of your doctor’s order. You can then use this estimate to determine whether you want to move forward. Counsyl also offers options for individuals that do not have or are not covered by insurance. To date, we have screened more than 850,000 patients and worked with more than 17,000 healthcare professionals. We strive to make our genetic screens as affordable as possible, so that anybody who wants the information can access it.

When is it best to speak to a genetic counselor rather an obstetrician, gynecologist or geneticist? What can a genetic counselor help me learn that my doctor cannot?

There are a few situations where it is best to speak with a genetic counselor in addition to your doctor. If you have a personal or family history of a rare disease and want to learn more about whether it can be passed to your children, a genetic counselor can help you understand the inheritance pattern and navigate the pros/cons of pursuing testing. Since even expanded carrier screening panels do not cover all mutations associated with rare diseases, a genetic counselor can also help you choose the right DNA test. When it comes to utilizing genetic information, there are no right or wrong decisions, as every situation is unique and personal. Genetic counselors are up-to-date on advances within the field and can help parents think through every decision path. As you know, some parents with deaf children choose to learn sign language and embed themselves within the deaf community; others do as you did and pursue cochlear implants to enable hearing. Both are valid options— different strokes for different folks. As such, when a couple is found to be at risk of passing on a genetic disease to future children, speaking with a counselor can ensure that they have fully explored every possible intervention and chosen one that is right for them. In this regard, Counsyl makes it easy to access professional guidance. They employ more than 50 board-certified genetic counselors who are available on demand via teleconsult once test results are available.

If my husband and I are both carriers, what are my options to ensure a healthy baby?

Two healthy carriers of the same disease gene have a 1 in 4 chance with each pregnancy of conceiving a child with the disease. There are a few exceptions to this rule, because certain genetic diseases are only inherited from mom to baby. Parents use this information in different ways, based on their personal values, the severity of the disease for which they are carriers and the availability of effective treatment. Some couples choose to conceive naturally and “wait and see,” since the odds are in their favor to conceive a baby without the disease. At 10 weeks of pregnancy, these couples might elect to pursue a chorionic villus sampling (CVS) to determine whether their pregnancy is affected. Having this information upfront equips parents with the information necessary to make the right decision for them. For some it allows them to either better prepare for the birth of a child with a chronic or terminal illness, or it may lead them to the difficult decision of ending the pregnancy. Other couples choose to conceive using a sperm or egg donor who is not a carrier of the same disease, thereby reducing their risks. Finally, some parents choose to adopt children, while others may elect fertility treatments (IVF) and test embryos prior to transfer. Where IVF is used, only unaffected embryos are implanted into mom’s uterus, a procedure known as preimplantation genetic diagnosis (PGD).

Shivani Nazareth is Director of Medical Affairs at Counsyl, a DNA testing and genetic counseling service. She worked as a clinical genetic counselor for over ten years in New York City, most recently at Weill Cornell Medical College. Shivani obtained her graduate degree from the Icahn School of Medicine at Mount Sinai and currently serves on the National Society of Genetic Counselors’ Public Policy Committee.

How has genetic testing changed since you started working in this field? Have new screens been added over time (which ones?) What are some of the most recent advances and most active areas of research?

I’ve been a genetic counselor for nearly two decades, and in that time, the field has advanced tremendously. We used to offer genetic screening for only a handful of diseases, like cystic fibrosis and Tay-Sachs disease, based on a patient’s ethnicity. The tests were ordered gene-by-gene, rather than in panels, and the mutations were pre-specified. This meant that most people did not learn they were carriers of rare diseases until they gave birth to a child with the disease. Today, we can test for hundreds of genes and thousands of mutations at approximately the same cost, if not cheaper, than previously used technologies. This gives parents-to-be many more options. If I were to think of an analogy, it would be akin to the way we listen to music. We used to purchase CDs and have access to only a few pre-selected songs. Today, we can download hundreds of songs in digital format, and the previous modality seems absurd. This shift in the way we access genetic information has allowed researchers to focus on treatments that are specific to a patient’s individual makeup, referred to as personalized medicine. It is an area of active research that has made DNA testing relevant to many common conditions, not just rare diseases. One day, we will balk at the idea that the same medications were used for all patients with a similar diagnosis. Instead, medications will be tailored to a person’s genetic makeup, increasing effectiveness and decreasing side effects. In short, a better understanding of an individual’s DNA will change the way we practice medicine. Counsyl has paved the way within the field of reproductive medicine, giving couples more options than ever before to conceive and sustain healthy families. Your family’s story is a great example of the impact that critical genetic information can have in improving the life of a child. Truthfully, this is the stuff that gets me up and going each morning, so I thank you for being brave enough to share your story with the world.  

Thank you, Shivani for sharing your time and insight with us! 
P.s. you may also be interested in checking out Five Takeaways After a Failed IVF Cycle and The Call (where I discuss obtaining the results from our Counsyl tests).

 

What is the Best Piece of Advice You Have For Parents of Babies with Hearing Loss?

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When Sonya was diagnosed as deaf at just two weeks of age, I never felt more alone. No one in our family (to our knowledge) was deaf, and none of my friends had children with hearing loss. I didn’t know where to turn or who to talk to. In those early days, I didn’t realize how valuable communities that congregated on Facebook could be to my family, as we faced so many unknowns. Today, I am connected to three wonderful Facebook Groups: Parents of Cochlear Kids, Parents of Children with Cochlear Implants and Parents of Children with Hearing Aids. I strongly encourage parents not yet connected to these groups to do so. You can find valuable information, seek advice and connect with so many different people who are affected by hearing loss.

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I recently asked parents in these groups the following question: “What is the best piece of advice you have for parents of babies with hearing loss?” I received so many amazing comments. I am sharing them here:

“Don’t let the shock and grief overwhelm you. Your child is perfect and your family might be different from what you thought it would be, but the hearing loss will become the new normal.”

“I was so upset and stressed out when we found out, and we didn’t really know much about cochlear implants. Those sound approximations online for what it sounds like to hear with CIs are horrible and I wish I never listened to them. Instead I wish I read posts from parents on this group and adults with CIs on what their experiences are like. It’s very scary at the beginning but everything works itself out one way or another.”

“You may be heartbroken for your little baby, and that’s okay. Be heartbroken, be upset, cry, scream, but move forward. Your baby will be okay and you will be okay.”

“Give yourself time to grieve. You will be upset, mad and question why this happened to your child and that’s all okay. Don’t compare your child to any other. All our kids have a different story and every experience will be different.”

“Find other parents to talk to who have been through the same experience.”

“It’s not the end of the world, it’s the beginning of a new one.”

“Read everything you can get your hands on. Ask all the questions. You are your child’s best advocate and it helps to understand what’s happening. Narrate your every move. Everything. Language rich environment. Accept the child you have. The “Welcome to Holland” poem expresses it well. This is how life is, we roll with what we are given and we find the joy in it.”

[And here is a link to that wonderful poem, in case you haven’t yet read it]

“You will very quickly realize you are stronger than you ever realized. But with that strength comes so much fear, doubt, and uncertainty. And that is perfectly okay. Cry, scream, and get angry because the person that emerges can face anything. And all the while your child will know no different and still be your perfect child. They will laugh and smile and still think you the center of their universe. And once the hearing journey begins and you hit your first milestone there will be no greater feeling in the entire world.”

“Keep talking to your baby! No matter how silly you feel. It matters!”

“‘Acceptance comes and goes.’ Hands down the best thing the person from early intervention said to me. Also, reading a lot from a deaf perspective made me realize my daughter may be perfectly happy with who she is and to see it more as deaf gain rather than hearing loss.”

“Language acquisition through sign language and spoken is so very crucial in the first few years. Sign language doesn’t inhibit spoken English! Help parents understand all is not lost because their kiddo is hard of hearing or deaf. One does not have to be hearing or speaking to be successful. Reach out to the deaf community for advice as well.”

“I am 100 percent happy that we went ahead with using ASL and speech together. Zero regrets. Best choice ever. My four-year-old loves both. It’s all about opening doors for her, not closing any of them. I also have zero regrets that we chose to implant. In the end, I did not need the complete approval of either the auditory/verbal only people or the deaf community. What I needed was to know that my daughter was given every opportunity available. She can choose to live however she wants to later. We will have given her the tools to go verbal or to join the deaf/ASL community or to do some combo of both.”

“Go with your gut ALWAYS. You are your child’s best advocate.”

Thank you, to all of the parents who shared their thoughts. I hope readers find them as helpful and comforting as I do.

Do you have advice that helped you? Please share it in the comments section below! 

P.s. You might be interested in reading my earliest posts including:

Birth and Deaf

Grieving Hearing Loss

The Surgery

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

Cochlear Monkeys, Leg Brace Bears, Baha Bunnies And More Available At Becca’s Crochet Studio On Etsy

One of Sonya’s favorite toys she received over the holidays was her monkey, which I purchased at Becca’s Crochet Studio shop on Etsy. It is beautifully made and super cute. Best of all, the toy was fully-customizable. I chose the animal, color, type of device and even color of the device. Becca was lovely to work with and her turnaround was super impressive (we received it just over a week later)!

Cochlear Implant Monkey
BAHA Bunny
Leg Brace Bear

Becca Sherman, the founder of Becca’s Crochet Studio is a third year doctor of audiology student, who volunteers part-time in a local children’s hospital. Like me, Becca noticed that there are few toys out there that prominently feature cochlear implants and hearing aids (as well as other devices) and decided to fill that void with her creations. I was curious as to how she started this business and she was kind enough to answer a few questions!

What inspired you to start creating toys with CIs? 

I taught myself to crochet right before graduate school and quickly realized I loved to make stuffed animals. After about a year of encouragement from friends/family, I decided to start selling them (they had been inundated with my creations)! After a few months, I got to thinking, there aren’t many toys for children with hearing loss, so why not add animals with cochlear implants and hearing aids to my Etsy store? It quickly spiraled from there and I received more orders than ever before. It became clear there was a huge need for toys like these and I decided to branch out and now offer animals with G-tubes, tracheotomy tubes, insulin pumps and more.

Do any toys you made for a particular child stand out?

I volunteer in a children’s center for a local hospital. One of the little boys I often work with has to wear a mask outside of his home to protect himself from germs (he is immunocompromised). I made him a monkey with a medical mask just like his and the reactions from him and his family were absolutely priceless, and will be something I will always remember. It was amazing to see the impact a toy can have on a child and reinforced my belief that inclusive toys should be available for every child!

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I choose animals where I can crochet their devices to stand out so that children can feel proud about their own devices, and even use the toys to educate their peers about their differences. Each toy takes seven to nine hours to make.

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Becca Sherman, Founder of Becca’s Crochet Studio on Etsy

What is your background?

I have been working with children for as long as I can remember — both typically and non-typically developing. Throughout my life I’ve moved through different artistic mediums (from painting to quilting and pretty much everything in between). Crocheting is the only of these crafts I’ve really been able to master. To be able to create something that benefits children is incredibly rewarding and combines two of my favorite things.

Thank you, Becca for your beautiful creations which we cherish! Bonus! Get 10% off your order with the coupon code SONYAROSE. 

P.s. I wrote about other toys and gifts that feature cochlear implants and hearing aids here and here.

 

 

Nine Ways to Incorporate Speech Therapy Into Playtime At Home

This post originally appeared in one of my favorite blogs about speech therapy, Language for the Playground. If you haven’t yet checked out this site, I would greatly recommend it. Especially the post on The Connection Between Language & Theory of Mind and Vocabulary Development for Children with Cochlear Implants.

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In order to successfully integrate Sonya into our society, we need to implement many, many hours of hard work and discipline. While a percentage of Sonya’s success is based on the care she receives at the Center for Hearing and Communication in New York (where she receives her speech therapy), the most important factor determining how Sonya fares will be dependent on the work we do at home.

It was a frustrating position to be in, as I was the least educated/skilled person in this arena, and yet, the greatest weight was placed on me – especially as my husband works and I am at home. I took it upon myself to learn the tactics used by our speech therapists and implement them at home. Here are some of the ways that we do so when playing with Sonya outside of speech therapy:

1. Give opportunities for your child to ask what they want. For young babies, if a favorite toy is out of reach, wait for her to vocalize that she wants that toy (even a grunt), before reaching for it and handing it to her. As Sonya got older, I would try to wait at least seven seconds for her to ‘use her words’. If she grunts and points at a toy, I simply say, “what is it you want? I don’t understand ‘ugh!’” [pause about seven seconds] and almost always, Sonya will realize that it is her turn to speak, so she will say, “Mama can I please have that toy?”

2. Imitate the sounds and facial expressions your baby makes.

3. Encourage your baby to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “ahh” and when we play with a car, we make the sound “beep beep.” The goal is for your child to associate certain toys with specific sounds to understand that some sounds convey more meaning than others. Now that Sonya is older, we work to ensure that she understands the real names for objects. She used to call fire engines “wee-wahs” but we would correct her and say, “Oh you mean fire engine? Yep! There goes a fire engine!”

4. Encourage your child to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging your child to stop and listen to the sound – and then identify what the sound is that we are hearing.

5. Narrate what is happening throughout the day. Use simple language to describe the events as they are happening. As I prepare Sonya’s dinner, I will tell her what I am doing. “Now, I am cutting up the apple! Chop! Chop! goes the knife.” This was a tough one for me as I am naturally an introvert, but overtime it became a habit.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining.  Sonya LOVES to sing.

7. Read! When Sonya was very little, we chose books that had large pictures and were not too detailed. We would describe the pictures. Now, Sonya is almost three and we read early reader books. I hold the book and read the words, so that she can’t see the pictures. I ask her to repeat what I just said, and once she does this, I reward her by showing her the pictures. Kids with hearing loss tend to be very visual, so they can get lost in pictures and not really listen to the words. We find this really helps her to listen carefully.

8. Correct your child when they make mistakes. When Sonya says “I need primacy!” I respond with “Oh, you need your priVAcy? Ok, I’ll make sure to give you some privacy.” (Emphasis on the part of the word she misspoke). I don’t force her to say words correctly, but I do make sure to repeat the word a few times afterward so she really hears the right way to say it.

9. Go over language goals at night with your partner so that you are on the same page. Our speech therapist prints out notes following each of our sessions and as consistently as possible, my husband and I discuss these notes at night over dinner, to ensure he understands what Sonya is working on as well.

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Sonya is now three years old and is in a mainstream preschool in New York City. We are endlessly delighted in the progress she has made these past few years and are particularly pleased to see her relate with her hearing peers in the same manner as any three year old would.

Above all, I feel like my relationship with Sonya is very strong because of the time we have spent together developing her speech and listening skills. We have a long way to go still, but as they say it’s the journey not the destination.