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

pregger
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.

IMG_1693

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.

view@2x

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).

 

A British Accent?

IMG_5456 (1)Maybe I have been watching too much of The Crown, but lately, Sonya’s speech has been a bit… fancier. It could be a mapping issue or an auditory memory issue (meaning she is just used to saying words this way and it is habit), but she tends to speak with a British accent at times.

It’s really quite adorable, and I am sure this has something to do with the fact that she continues to speak this way. We likely encourage it.

When asking Sonya to pick up her toys, she responds, “I just cahn’t!”

We are working with Sonya’s speech therapists to resolve the issue. First we show her a picture of a beach and explain that it is “hot” there. Then we show her a picture of a “hat.” Sonya will most of the time choose the right picture when asked. When we reverse the roles her production becomes better.

It could also have to do with her love for Peppa Pig

I plan to bring this up at her next mapping. Sometimes these little issues resolve themselves overnight.

Image-1.jpg
Sonya at Buckingham Palace this fall

 

Why Carrier Screening Is So Important to Us

When I was just ten weeks pregnant, I received a call from my doctor. She had information regarding our genetic results from our Counsyl test. I didn’t realize it at the time, but this call would shape my world. At that moment, we learned that both Yan and I were carriers of a non-syndromic hearing loss gene called Connexin 26. This meant there was a one-in-four chance that our future child (who we didn’t even know yet was a girl!) could have hearing loss.

Following the call, I locked myself in the bathroom stall at work and sobbed. I didn’t know how to process this information. To have a child who was deaf – what would that mean? What would their life be like? Would they even be a part of our society?

When we told our family their reactions were all over the board. Some were angry: “Why the unnecessary testing?” They demanded. “This is putting unnecessary stress on Missy at a critical time in her pregnancy!” As the weeks continued, however, a cloud of acceptance settled. I decided to remain in denial. My focus was to stay healthy for me and the baby – that was it. Yan, on the other hand, and our family, took action. Since they had information, they were going to do what they could to ensure that in the event our child was born with hearing loss, we would be able to take the next necessary steps and swiftly.

Having carrier screening during pregnancy (ideally before, but in our case during) was a game changer for our daughter Sonya. After a stress-free birth, free of complications (thank God), Sonya didn’t pass her hearing screen at the hospital. I knew she was deaf. A couple weeks later, we went to NYU audiology where profound hearing loss was diagnosed in both ears. Had we not had this carrier screening done, we might have followed a prominent Ear Nose and Throat doctor’s advice – which was to wait it out a couple months – over the advice of a young audiologist, who urged us to get Sonya hearing aids and to meet with NYU’s Cochlear Implant Center. We are so thankful that this information was available to us so that we could make the informed choice that was right for us.

This is why we collaborated with Counsyl to tell our story in the video above. We believe that expanded carrier screening has benefits that far outweigh any downsides of testing, including the fear of the unknown. Many parents don’t necessarily want to know – but knowledge is power and the ability to act for your child’s best interests day one, is a critical advantage. We weren’t directly compensated for this video, but Counsyl did make a generous donation to the Center for Hearing and Communication, where Sonya receives speech therapy and audiological services.

Thank you, Counsyl!

Sports and Cochlear Implants: One Swimmer’s Story

When Sonya received cochlear implants, one of the first challenges we faced – before learning to listen or speak was simply – how to keep them on her head. At 3, Sonya is not yet into sports, but whether her devices will prohibit her from participating in such activities in the future is a question I have wondered and have heard from other parents of kids like Sonya.

IMG_0004

Through Facebook, I connected with Summer Harrison, a mom to four kids, two of whom have hearing loss. Her oldest daughter, Paisley, received hearing aids at one year of age, and was implanted with cochlear implants on one ear when she was three years old, and on the second at three and-a-half.

Today, Paisley is seven-years-old. She is a competitive swimmer. Summer recently posted the below video to her Facebook page of Paisely diving into a pool during a swim meet, and mentioned how Paisley’s coach talks to her using a Mini Mic. I just had to hear more:

Can you tell us a bit about Paisley’s hearing loss? How did you learn of it?

Paisley is the oldest of four children and has a twin sister Presley. Born at 34 weeks, the girls spent two weeks in the NICU. While Paisley failed her newborn hearing screen, she was not officially diagnosed until she was ten months of age. She received her hearing aids when she was a year old. Because of my background as a Deaf Education teacher and certified interpreter, I felt it important that Paisley have access to both sign and spoken language. The hearing aids were wonderful for the first couple of years. Paisley’s spoken language skills quickly took off with the additional amplification, but at two and-a-half, we noticed that she was behaving in ways that weren’t typical for her. Her spoken language skills began to plateau and she started to increase sensory seeking behaviors and meltdowns. During this time, I also noticed Paisley become more dependent on sign language to communicate. Audiologists and speech therapists confirmed that she needed cochlear implants.

Paisley received her first cochlear implant at 3 years and 2 months, and her second five months later. While we continued to use sign language after activation, Paisley soon told me to stop signing because in her words, “she didn’t need it.” Paisley still knows some sign, but prefers to listen and speak.

How did Paisley get into swimming?

My parents have a pool and Paisley has always loved the water. She would stay in until we made her get out. After watching the 2016 summer Olympics, she became interested in competitive swimming. This past summer, Paisley had a few lessons with a woman who coaches competitive swimming and then Paisley tried out for a local team.

Which device does Paisley have? Does she use additional equipment?

Paisley wears the Cochlear Nucleus 6 sound processor. She wears the Nucleus Aqua+ for swimming which is a silicone case that her processors slide into in order to make it waterproof. It comes with special coils that are made for swimming. It also has a fishing line type cable that I clip to her swimsuit in case it falls off while swimming.

How does Paisley’s coach handle her hearing loss? Is it an issue?

It is sometimes difficult for Paisley to hear when she’s in the water because it is loud in the pool are and because the Aqua+ and her swim cap muffle the sounds a bit. Paisley’s coach has been very patient and wonderful. She wears Cochlear’s Mini Mic 2+ when she isn’t in the water with the kids, and when she is in the water, she makes sure that Paisley is able to see her and understand what she says. Her coach even learned some sign to help give Paisley instructions during swim practice. Our audiologist set up a special program for Paisley that helps her hear a little better when in the pool as well.

20170612_081328
Presley and Paisley
FullSizeRender
The whole crew. From left to right: Paisley (7), Pierson (2), Patton (3) and Presley (7).

How does Paisley keep her coils on her head while swimming?

Her coils stay on well since she wears a swim cap, but for race days, I usually braid them into her hair to help them stay on better. On practice days, I usually just tuck them under her hair and pull her hair into a pony tail.

What precautions do you take to protect her implants?

When Paisley swims, we always make sure that her implants are secure in the Aqua+ and that the retention cable is clipped to her swimsuit. After she is finished swimming, all pieces of the Aqua+ and her processors go into a drying box to make sure there is no moisture left.

zephyr
Paisley uses a drying box like the Zephyr to ensure water doesn’t affect her processors

Have you ever damaged equipment during a swim event?

The only issue we have had so far is that once Paisley didn’t get her Aqua+ case closed all the way and water got inside with the processor. Her coach helped her get the water out and seal it better so that it didn’t happen again. The devices never stopped working, however. When we got home, I put the wet processor in the drying box to get rid of any excess moisture. After this incident, I help Paisley make sure her Aqua+ cases are closed properly before she heads into practice.

Has swimming helped Paisley with her language?

Swimming helped Paisley develop better social skills. She is learning specialized language she never would have been exposed to had it not been for swimming. She is learning to follow directions well, and has made great friends. Paisley is learning what it means to compete and accept that you don’t always win. Knowing she has to practice hard to improve her skills is a valuable lesson. While Paisley always gets nervous before a race, I am thrilled with how much she enjoys it.

If you could tell a new parent to a child born with hearing loss one thing about their kid’s future, what would it be?

You will learn things about yourself and your child on this journey that will amaze you every day. I think it’s important to connect with other parents so that you can share your grief and your victories. It’s a unique journey and it helps to surround yourself with others who understand what you are going through.

Go Paisley Go!!! Thank you Summer and Paisley for sharing your story!

P.s. You can read more about Paisely and her incredible family on Cochlear Americas website here.

 

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

Facebook pic

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.

unnamed

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)

Photos and Videos From Our Palo Alto Trip

Happy New Year! How was your break? As in prior years, we spent the last couple of weeks in Palo Alto where we visited family and Sonya consumed massive amounts of Russian chocolate cheese or CbIPOK. Basically this is cheesecake covered in chocolate, but my Russian in-laws insist it’s very healthy.

jb7BNcvhSUOoGu795N4HLQ

Our first visit was to Stanford. Sonya took her Micro Mini and scooted around campus while Yan and I strolled around sipping coffee from the student lounge. The colors in Palo Alto this time of year are quite extraordinary. From late morning to late afternoon the sun hits at such an angle that the leaves on the trees sparkle and you feel just so thankful not to be in New York where the temperature was an ungodly four degrees Fahrenheit. 🙂

As in prior years, we stayed at Yan’s parents house in Midtown Palo Alto. Sonya was thrilled to help decorate their beautiful New Year’s tree.

And Yan dressed up as Ded Moroz, the Russian Father Frost. It was a frightening experience for all.

Good thing we had an amazing Russian meal (and Vodka) to help erase that memory…

TG2CtoySsOzabH90vICqg.jpg

A highlight of the gifts received this year was an easel from Ikea which has a chalkboard on one side and a white board on the other.

2KZ7b00Sv2fnEf5EuIEXA-1.jpg
Sonya said it was a parrot and I think she may be an artistic genius now 🙂

Above all, Sonya loved to draw portraits of our family (though I am not sure whether the below video should concern me or not)…

Since my brother, three sisters-in-law, two nephews and niece are also in the Bay Area, we spent some time with them too. It was so amazing to see Sonya and her cousin Zoe play together. They are just a few months apart in age, and yet I can tell are soul sisters. 🙂

IMG_5322
My best photos are a blur as Sonya and Zoe ran in circles around one another

 

 

IMG_5182
Sonya gave her sweet baby cousin David a side eye as they played a duet on his piano

Finally, we were able to spend a couple days in one of our favorite places in the world (where Yan and I also got married…) Calistoga! It was Sonya’s first visit and such a special time for us.

XaxogExMQVy5xRtk8FihWw5IHQYvKmQCa7djWbYXN9pA

We decided to do the most touristy thing possible and take the tram up Sterling Vineyards. Sonya loved the ride and the food. It culminated in a wine/graham cracker tasting.

IMG_5498IMG_5268IMG_5260

When we got back to Palo Alto, Sonya made a big speech leap! She is now articulating the “Z” sound so much more clearly (with some help).

As we left Sonya’s grandparent’s house for New York, Sonya sighed. “But I will miss Baba. I love her….also, chocolate cheese.”

 

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)!

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!

unnamed

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.

image.jpg
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.

IMG_5103

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.

hearingsonyarose.com

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.

We Love HeadbandsforSophia! Check Out Their Newest Designs and Colors!

Recently, Sonya became opinionated about how I do her hair. For her first two years, we would simply not do anything and just put a headband around her head, or tie it up in a top knot with a Rubyband headband. We still love and wear Rubybands, but now that she is three and attends nursery school, Sonya sees other little girls sporting braids. “I want two braids!” she often demands in the morning (typically when we are already running 15 minutes behind schedule, of course!)

With a new hairstyle, came a need for new hair accessories that would hold her processors.  Luckily, a friend of mine told me about HeadBandsforSophia, beautiful and well-made headbands that we adore. I love the sweet and simple designs that seem to work with many of Sonya’s clothes. I especially love the fact that these headbands hold her processors in place behind her ears, and are perfect for when Sonya has to wear a hat or a helmet.

The newest design Dino Dash features seven distinct dinosaurs in emerald green, capri blue, silver gray, chestnut brown and coral pink! It’s so refreshing that the designs are not gender specific.

dino dash

Of course, Sonya is particular to the bands featuring sparkles, in any color. I recently had the privilege of connecting with Erika Smith, the founder of HeadbandsforSophia.

IMG_5043
Erika Smith, founder of HeadbandsforSophia

What inspired you to start HeadbandsforSophia?

My daughter Sophia is the inspiration and namesake of my Etsy shop. She is the second of my three daughters. She was born profoundly deaf and was bilaterally implanted with Cochlear’s Nucleus 5 at twelve months.

Growing up, we always used some sort of homemade headband, hair rubber bands or wig tape for keeping her processors on. About two years ago, at age 5, she got very self-conscious and wanted to be able to wear pretty hair accessories like her friends in Kindergarten. Her old headbands were functional but not so cute. That was when I figured I needed to integrate function into fashion, and began sewing these elastic headbands. I designed these to keep the processor in place behind the ear, hopefully as good training for the day in the future when she wouldn’t need any retention aids. She started getting lots of compliments wearing these and it made her feel special.

Today, Sophia is nearly 8 and still wears them daily, especially because they let her run around and do somersaults and roll around on the floor. She plays soccer and does ballet. Mainstreamed children with hearing loss already deal with a lot of stressful situations at school, such as social interaction and listening fatigue — this is one less thing she has to worry about during her day.

IMG_20171210_142503_200.jpeg
Erika and her beautiful family!

What is your background? Did you have prior design training?

I have an undergraduate degree in Psychology and a MBA. The closest I’ve come to retail fashion was working in a children’s clothing store in the mall for a summer job. I remember that customers would call the store and specifically request me by name to put together gift sets, so maybe I do have a knack for picking out what customers like!

As for sewing, I’m a late bloomer. I’ve always had a sewing machine but could only sew a straight line, never mind anything with a pattern. Only after I started my shop and sewed headbands for six months straight, I made a mermaid costume (under duress) for my older daughter performing in summer stock. Nowadays, my other creative outlet is making cute bedding for our two guinea pigs.

Where do you get your materials and what goes into choosing your designs?

This is one of the most fun parts of the business, but also time consuming. At first, I only intended to feature Sophia’s personal choices, but I quickly expanded to include options for boys and wider range of ages. I try to add fresh new colors and prints to my shop every month.

Quality is really important to me. If the elastic is too thin, it doesn’t retain a good amount of tension and stretches out fast. My favorites are the elastics with an “oil” or “foil” metallic print like my classic silver polka dots on black shown in my shop picture, and of course, the glitter elastics. Because the glitter elastic is so strong it can take a little time to break in but it ends up being very durable. I offer a range of elastics so that customers can figure out what they like best.

Most of my ribbons are sourced from wholesale distributors in the US, but I recently started working with an overseas ribbon factor to custom print my new design. I’m proud to announce my new and exclusive “Dino Dash” print which comes in five colors and displays seven dinosaur oil-printed silhouettes.

How long do you spend on each headband?

I spend on average five-minutes on the actual production of each headband. I also spend time managing other aspects of the business, such as order processing and mailing, bookkeeping, keeping up listings on Etsy, and responding to questions, etc.

It’s eye-opening how far the cochlear implant network extends around the world, and how we share a similar experience as parents across so many cultures trying to keep cochlear implants on our children! – Erika Smith, Founder of HeadbandsforSophia

Do you only sell your pieces on Etsy? Do you have plans to grow?

As a made-to-order seller, I currently only sell on Etsy. It’s a great platform for reaching an international audience, and they have made my headbands very visible via Google search. However, I’m considering the idea of creating another online store separate from Etsy in 2018 and eventually adding other function and fun cochlear implant-related products.

My hope is that someday we won’t need headbands like these! The new all-in-one processors like Cochlear’s Kanso and MED-EL’s Rondo are the next wave of cochlear implant technology which may eliminate the need for behind-the-ear retention.

I am a stay-at-home mom and consider this as a part-time commitment. If demand increases, I may have to hire someone to help sew the headbands, but that would also mean an increase in cost, which I want to avoid. I wanted to price these competitively and fairly, since cochlear implants are already a huge expense for some families.

Any other aspects of your work that you find interesting? 

I really enjoy working with customers to experiment with different designs. Sometimes customers will want to try positioning the processor on the headband a different way, and I’m happy to oblige.

I ship worldwide and you would be surprised at how much time I spend processing international orders. I manually verify each address and print out custom labels. In the past, many international packages were lost or significantly delayed. Replacing an order meant sewing a whole new set of headbands and paying to re-ship at my expense, per my customer service policy. Fortunately, by taking more time to check addresses, I’ve been able to nearly eliminate this problem.

The farthest I’ve shipped to is Saudi Arabia. It’s eye-opening how far the cochlear implant network extends around the world, and how we share a similar experience as parents across so many cultures trying to keep cochlear implants on our children!

Are you surprised by the popularity of HeadbandsforSophia?

Absolutely. When I first started, I thought I would be lucky to sell about 10 headbands a month. I started it only as a hobby, wanting to help others find a solution, and thought it would be a good way to off-set the supply costs for making our own headbands. Things really took off about four months after I started, when I got a large order of a few hundred headbands from an early intervention program at a school for the deaf.

Thank you, Erika! We just love HeadbandsforSophia and you are an inspiration! Bonus! Get 10% off your order with the coupon code SONYAROSE. 

It’s Sonya in Crochet Doll Form! And Other Adorable Gifts Featuring Cochlear Implants

 

IMG_5020

IMG_5019

I ordered Sonya the custom MadebyToriC doll through Etsy and it was even sweeter  than I imagined!  Tori was lovely to work with. I gave her details about Sonya’s hair, the colors of her processors and I received it in a week’s time. Impressive, Right??!!! She captured Sonya’s pigtails and RubyBands headband! This is such a lovely gift. I can’t WAIT to give it to her next week for Hanukkah.

baby doll with CIs

Another Etsy find: A baby doll with cochlear implants (from LeSoZo Arts). Looks like there aren’t too many in stock though, so I would order one soon!

Sophie’s Tales Overcoming Obstacles is a book about Sophie, a little dog with hearing loss who wears cochlear implants. The book comes along with an adorable stuffed Sophie with bilateral cochlear implants. You can have the book inscribed to your child as well.

Harmony Hears a Hoot is a sweet children’s book about a young owl named Harmony who attends her first day of school. I love how proud Harmony is of her uniqueness as well as how she advocates for herself by teaching her schoolmates and teacher about how she hears. Author Fara Augustover doubles as a speech pathologist. You can buy the crochet owl as a companion to the book on the author’s website.

peekachoo with implants

Pikachu is even cuter with cochlear implants, agree?!

Some other ideas:

An Apple Watch – Did you know they are great assistive listening devices? Also,
Unique earrings to adorn hearing aids.

P.s. Here is my last list of toys featuring cochlear implants.