Hello! My name is Kaila, and my husband Zach and I are first time parents to our sweet 9 month old daughter, Harper.
My husband and I were ecstatic to find out we were pregnant shortly after getting married in 2018 and deciding to start growing our family! Minus the late night bathroom breaks and carrying a box of tums everywhere I went, I was blessed with an easy and very enjoyable pregnancy.
After being induced, reality set in that labor was going to be no joke! I ended up having an emergency Caesarian section, which landed our daughter in the NICU for a few days monitoring an infection they believed I contracted after my water broke.
Prior to leaving the hospital, we were informed that Harper failed her newborn hearing screen. Like so many families who are going through this journey, they told us not to worry and they could physically see vernix in her ears (the nice white layer your baby is covered in when you give birth), and that it was probably fluid that hasn’t had a chance to clear out of her ears yet. We made an appointment to come back to the hospital in two weeks to re-do her hearing screen, and we headed home.
Two weeks later, we came back to the hospital and got to sit-in and hold Harper while they performed the hearing screen again, and again, and once more for good measure. We watched as she failed all three screens. It was then that the worry started setting in.
After being referred to an audiologist, we completed her ABR (Auditory Brain Response Test), which determined that Harper has bilateral profound hearing loss. This means she did not have any response to the highest possible decibel and frequency that the test could read. Our daughter was profoundly deaf.
The first two emotions I remember feeling are frustration and disbelief. Disbelief that something like this could happen to MY baby, and frustrated that there was nothing we could do as her parents to change her diagnosis.
After much research, we decided that cochlear implants were the best decision for our family. We were ready to commit as parents to do whatever it takes to make sure Harper has an opportunity to thrive and have access to as many modes of communications that she can. She is currently wearing hearing aids to help stimulate her auditory nerves prior to her bilateral implant surgery. Hearing aids only help amplify sounds your ears are capable of hearing, and since Harper has sensoneurial loss due to genetics, we know she’s not getting much access to sound. We cannot wait to see her reaction on her activation date this summer!
My husband and I recently found out that we both carry a variant of connexin 26, which is one of the most common types of gene mutation to cause non-syndromic hearing loss (this means no other medical issues should accompany her hearing loss), and that we have a 25% chance of having another deaf child.
I could write a book on the amount of advice I could give on anyone just starting off on this journey, even being so new to it ourselves. But here are my top pieces of advice:
1. Let yourself feel and work through your emotions, and know that whatever you’re feeling is healthy, normal, and okay! Whether your initial reaction is frustration, anger, shame - it does not mean you love your child any less. Your feelings will come and go, but I promise they won’t last forever.
2. Knowledge is power. Regardless of whatever mode of communication you choose for your child, becoming as informed as possible about hearing loss, your options, and what would work best for your family. There is no right or wrong decision. My husband and I drove home after we got Harpers diagnosis, got onto YouTube and watched hours of videos about cochlear implants and deaf culture. We cried, laughed, and felt a lot of hope. We felt more in control and educated on what we could do as parents to make sure we could be prepared as possible for what was to come.
3. Do not be afraid to accept support! Never underestimate the power in knowing you are not alone. Check with your area and see what type of resources are available. We would have never know there is a Deaf/HOH playgroup that meets every week a mile from our house! We are also blessed with social media outlets to meet parents, adults and professionals who are going through our EXACT situation. I never wanted to admit that I would need to join any support group, but it has been the biggest blessing we could ask for!
4. You are your child’s best advocate. If something doesn’t feel right, speak up! Remember these are doctors and therapists you will be working with throughout your child’s life. If you don’t feel comfortable or don’t feel your child is getting the care they need, switch audiologists or get a second opinion. We switched for this reason, and could not be happier we made that decision.
5. Enjoy your child! Try to educate yourself as much as possible, but don’t get too caught up in research and appointments that you don’t stop to take in and enjoy your child for the perfect version of themselves that they are. I always wondered if I would ever look at our daughter and not automatically think of her hearing loss. That day has come, and it happens faster than you think. As long as you allow yourself to take a step back and enjoy every little laugh, snuggle, and the simple joys that come from being a parent. One day you will look back, after everything has worked out and your worries subside, and you will be happy you spent your time enjoying the little moments 🙂.
GUEST HEARO- Jessica & Matt Bolt
My name is Jessica Bolt. My husband, Matt, and I have been married for 5 years and currently live in a suburb of Houston. We have a 4-year-old son, Parker, and 9-month-old daughter, Annie. We also have a beloved golden retriever named Rocky. Matt works as a software engineer while I stay at home with our kids. In my previous life, I worked in early childhood education and have an academic background in developmental psychology.
Did your child pass the newborn screen? (If they did not, can you share how you were educated or prepared at the time? For instance, I was told it was fluid and not to be concerned).
Our daughter, Annie failed her first newborn hearing screening test that was administered less than 24 hours after her birth. She failed a 2nd time when she was re-screened the following day. Then, Annie failed a 3rd time when she was re-screened again as an outpatient 10 days after being discharged from the hospital. Each time she failed, we were re-assured by the screener and evenby the hospital pediatrician, we were told not to worry and that it was most likely due to fluid in the ears and common with babies born via c-section. But after she failed the 3rd time at 1.5 weeks old, we were referred to an audiologist at Texas Children's Hospital where more extensive testing could be done in two weeks. The female hospital employee, who administered all three of Annie’s newborn hearing screenings, openly admitted that she did not have a background in audiology, that she was not familiar or educated on the types of hearing loss or possible causes of congenital hearing loss, and was therefore completely unable to provide us with any additional information or answer any of our questions. My husband and I left the hospital after Annie’s third failed screening feeling scared, helpless, uneducated, and so alone.
What is your child’s hearing loss and cause if known and willing to share?
Annie has congenital sensorineural hearing loss in both ears. Annie has moderate hearing loss in her right ear and profound hearing loss in her left ear.
We have yet to determine the cause of her hearing loss but we are hoping further genetic testing can provide some insight.
What was your reaction to finding out your child had hearing loss?
Feelings of shock and denial hit first, then came the deep, soul crushing sadness. I remember crying so hard I could hardly breathe as I mourned the loss of my daughter’s hearing.
What amplification and hearing technology does your child use, if any? How/why did you decide this route?
Annie is bimodal, which means she uses two different types of hearing loss solutions, one in each ear. Her left ear has profound hearing loss and requires a cochlear implant to hear and process sound. Her right ear has moderate hearing loss, this means the loss is not severe enough to need a cochlear implant but does benefit from a hearing aid. Both the hearing aid and the cochlear implant work together to provide better hearing for Annie.
We want to give our daughter every possible tool and opportunity available so that she can hear and process sounds and communicate with others using spoken language.
What language modality do you choose for your child and how did you make that decision?
We have chosen to focus on using spoken language with Annie. We made this decision after extensively researching and analyzing current research findings on this subject, and from the discussions and guidance we received from Annie’s medical team. We also sought out the opinions of a few close friends and family members, who are all doctors and medical professionals.
Best advice for other parents of kids with hearing loss?
Seek out and connect with other parents who are on similar hearing loss journeys with their children. Join a support group dedicated to parents of children with hearing loss, whether online or in-person.
Any additional resources that have impacted your journey?
Connecting and forming friendships with other mothers who are on similar hearing loss journeys with their children has been invaluable to me!!
Guest hearo- Melanie Dromarski
My Name is Melanie Dromarsky! I live in Calgary, Alberta, Canada with my husband Tim, 4 year old daughter Lillyana and our 11 month old son Emmett.
Emmett was born in March 2019. At that time our province had only been doing newborn screening for about 2 months. We did not have a screening done with our daughter and she has normal hearing. So this was all new to us. We had a midwife delivery so we were referred to an outpatient clinic for the screening when Emmett was only 9 days old. It was my first day alone with both kids so I was already feeling a bit overwhelmed. The result came back “refer” which I had no idea what it meant. I remember the technician was having a hard time administering the test so I didn’t think anything of it. The technician just said she wasn’t able to get a hold test and that there are a lot of reasons for a refer result but it didn’t necessarily mean anything. We were asked to come back for an ABR( Auditory Brainstem response) test to find out what was causing the refer result. I remember calling my husband and then just breaking down. I was so scared.
The first ABR was so hard. Emmett wouldn’t sleep for long and startled awake really easily. When the test was done, the audiologist just said she was unable to get any response to sound even at really loud decibels. She asked us to come back for another ABR in 2 weeks to confirm the results. I was so confused. What did that even mean? Like how is it possible that he can’t hear anything? We went back for our second ABR and the results were confirmed. Our son had Profound Sensorineural Hearing loss bilaterally. My husband and I were devastated. The audiologist just looked at us both and she was so cold and just told us this was something that would never go away, there was no fix for it, no surgery to help.
We were referred to the local Children’s Hospital for follow up. During the 5 weeks we waited for our appointment I started trying to learn as much sign language as possible, I cried a lot, and did a lot of research. I had stumbled upon Christy’s story about Charly and it immediately gave me hope. I complied a list of questions to ask at our appointment, the main one being about Cochlear Implants. I so wish in that moment when we received Emmett’s diagnosis that the audiologist would have given us some hope.
I remember just sobbing while I rocked my baby boy wondering if he would ever be able to hear me tell him I love him. Would I ever hear his little voice call me mama? I found it so hard when he would cry. I would want to sing lullabies to him but then I would stop and say “what’s the point? He can’t hear me.” A Close friend encouraged me to keep singing because even if he couldn’t hear me, he could feel it. It was in that moment that I new I just had to treat him as if he could hear. We didn’t want our daughter to treat him differently, so we couldn’t either.
Our appointment came and we were given the choice to go the listening and speaking route or the signing route. For our family, with absolutely no history of hearing loss, we wanted our baby boy to hear. We looked at his hearing loss as an obstacle to overcome, but we did not want it to hinder him from achieving his full potential. At this appointment we were given so much hope when we found out about Cochlear Implants.
At 8 weeks old, Emmett was fitted with his very first hearing aids. They were so tiny and I remember he would just smile and giggle every time we put them on. Our audiologists were not sure if he would get any sound from the hearing aids but in order to qualify for the Cochlear Implants we needed to go through a hearing aid trial. At this point, going from thinking my baby would never hear my voice, to the possibility of him being able to do so much more, We were willing to try anything.
Fast forward 9 months and many many appointments later, our sweet little boy is scheduled to receive his implants on April 6, 2020. I am nervous but filled with so much hope and excitement. Seeing the success stories of children with Cochlear Implants has taken a diagnosis that was so devastating into something that has so much potential to make a difference.
Seeking out other families who have similar experiences, and people with older children with implants has been such a turning point in our journey. Knowing that the sky’s the limit is unbelievable. We will always raise Emmett to believe that he can do anything and that even though his hearing loss is a part of who he is, it does not define him.
My best advice is to enjoy every minute of your baby. There is hope through technology to give your child access to a full world of sound and unlock their full potential. Find the success stories. The stories of hope. Know that you are not alone and be encouraged. When your child hears your voice for the first time, and the moment they say their first word, it will all be worth it!
Guest HEARO- Ashlee sitzler
Did your child pass the newborn screen?
No she did not, she failed the newborn screening and was tested at two days old first thing in the morning, we were told that it is normal for her to fail because she is so young, and my child was born with fluid in her lungs and ended up having to stay in NICU for a few days. We were told that because she was born with fluid in her lungs it was possible that there could be fluid in her ears. At the time of the test she was very restless, she was later tested again that same evening and failed again. We still did not think anything of it and were told to come back for a third screen when she was two weeks. We went back then and she failed again. At this time we still were not too concerned and we were referred to an audiologist to do an ABR. First off I would like to say that because we did not think anything of it, I went to the ABR by myself with my newborn. We were there for what felt like forever and at the end I was told that my daughter was profoundly deaf. At that appointment with the audiologist, she told me that my daughter was eligible for Cochlear implants if I wanted to go that route. Before that day I had never even heard of Cochlear implants or what they were capable of. I immediately called my husband after bawling my eyes out. He left work to meet me at home and we cried that entire night. We were devastated thinking of our baby girl’s future, and then we started researching more on cochlear implant‘s and became more educated on them.
What is your child’s hearing loss and cause if known and willing to share?
My daughter is profoundly deaf, and to this day we still do not know what caused her to be deaf. We did the connexin 26 gene test and it came back negative. We then determined it was not genetic and I had to come with terms that we may never know what caused her to be deaf.
What was your reaction to finding out your child had hearing loss?
My initial reaction was pure sadness. Before my daughter I have never really come into contact with a deaf person before. I went from being this happy new mom to this instant state of depression. I walked around feeling like I had a gloomy rain cloud on top of me all the time. I cried for probably about a month straight, and I was so scared for what her future would look like. I felt guilty I thought it was somehow my fault that I did something wrong during my pregnancy.
What amplification and hearing technology does your child use, if any? How/why did you decide this route?
Whenever she was three months old she received her first set of hearing aids. she had them until she was almost 8 months. At eight months she was implanted on her left side with her first CI. A few months after that she was then implanted on her right side. She is now 20 months and march 6th will be her one year “hearing birthday.” We decided Cochlear implants after seeing the success of early implantation and how much people can actually hear and speak through having cochlear implants. Because everyone in our family is hearing I wanted her to have that ability as well. I wanted her to be able to communicate with her friends and family in the same way we do as hearing people.
What language modality do you choose for your child and how did you make that decision?
My daughter is completely auditory verbal. We have not done any signing with her and we do not plan to in the future. She receives extensive speech therapy and is progressing very well through that, and we do not feel the need to sign because she hears and communicates so well through her implants alone. We made this decision after seeing how well she responded to the implants and realized that signing was not something that was necessary for her.
Best advice for other parents of kids with hearing loss?
Hang in there. It is tough and I wish I could say it gets easier with time, and in some ways it does. However, you will still have your bad and tough days sometimes, but you learn how to cope with them better. For me especially, I can say that as my daughter gets older and progresses, I’m starting to see that light at the end of the tunnel. Hold on to those little moments of progress, because they are going to make it worth your wild through this tough journey. Everything that you are doing now, it’s going to be worth it in the end. Just hang in there, because you will not regret anything that you are doing for your child now. You’re going to look back on those tough days and understand that they were worth every struggle you had to go through. Hold on to the love you have for your child, because it’s going to be what will get you through the day. And most importantly, take a deep breath, and tell yourself, YOU’VE GOT THIS.
Any additional resources that have impacted your journey?
More than anything I would just like to say that I feel that early implantation is going to be a huge part of a child’s success rate in Cochlear implants. Get them implanted as early as possible, and give them access to sound as soon as you can. My biggest resource in my journey would be one of my good friends who has two daughters that are deaf. I met her little girl who was three at the time and was implanted at eight months. I heard her talk so clearly and saw how well she could hear and understand me, and I broke down into tears and that was my biggest light at the end of the tunnel that I needed to see. After seeing her with her two girls I saw what Cochlear implants could do for my daughters future. I immediately told myself, “I want that, I want that for my daughter” I got her implanted as soon as I could. I also made sure that she wore her hearing aids to keep her nerve activated before getting implanted. After getting implanted I ensured that she was wearing her devices daily as much as possible, anytime her eyes were open, her ears were on. I worked with several speech therapist and I learned how to work with my child on her speech and language. I learned the Ling 6 and I worked with her diligently, and to this day I continue to work with her to ensure that her speech and language stays with her normal hearing peers. I think it’s safe to say that the work I’ve been doing with her is starting to pay off because, I am proud to say that with all of the speech therapy and all the work that I have done with her, she is 20 months, and at her last speech evaluation she was testing at two years one month. My daughter can also hear up to 15 dB, that is something that I never imagined would be possible, but here she is fighting the impossible. I honestly could not be more proud of her. She goes to speech therapy twice a week and I’m so thankful for all the speech pathologists and audiologists that worked with my daughter. I am also thankful for them because they me the tools and knowledge that I needed to be able to work with her so diligently at home. And it has been a whirlwind of emotions, and the emotions still hit me from time to time. But whenever I look at my little girl, I can see how far she’s come, and that makes me one of the proudest moms ever and I couldn’t ask for more.
Cochlear implant children are truly incredible, and they amazing me so much
Guest HEARO- Shawna & Blaine Dudley
Hey guys! My name is Shawna and my husbands name is Blaine, we have 3 sons together, one of which is deaf. Before Winston was even born we had talked about what we would do if he was born deaf, because my husband is also deaf. Winston did not pass his screening and they came into the hospital room and told us it could just be fluid and to make an appointment with the ENT. I just sort of laughed and said that my husband was deaf so I didn't think it was fluid, we just sort of knew that he was deaf.
When he was a few weeks old it was confirmed that he is profoundly deaf in both ears. We do not know the cause of his deafness. When we found out it was just sort of like okay, he IS deaf so what do we do now? What are our next steps? We had time before he was born to accept that he might be born deaf so I never was super upset about it. I do remember a few times feeling sad before he got implanted that he couldn't hear my voice, the hearing aids didn't do much for him. He wore the hearing aids until he got bilateral implants at 13 months old. We choose this route because for one my husband has an implant and also we wanted him to have access to sound as early as possible, whereas my husband didn't have implants until he was 4 years old.
We choose to go the total communication route which was a very rocky road at first and still sometimes is. As I said before, my husband is deaf and his parents put him through an oral program that is against any form of sign language. But there are times when he can't wear his processor and I still wanted to be able to communicate with him. We also wanted to give him access to any and all language so that when he grows up he can choose to be totally immersed in the Deaf community, or can choose to drop the sign language and just use oral communication or can do a combination of both. Currently we are dipping our feet in Cued Speech which is awesome! Our main goal is language and the understanding of language, we don't care how he receives it.
My best advice for parents of kids with hearing loss is that you know your child best, a lot of people will have their own opinions and thoughts on what route your child should take whether it be their mode of communication, their amplifications or anything else. While advice is nice, YOU are the parent, you know what is best for your child. Research different modes of communication, some doctors don't let you know that ASL or Cued Speech is an option. Reach out to other parents who have deaf children but don't compare your child's journey to someone else's! Everyone is different and learns and grows at their own pace.
Guest Hearo- Michele & Robbie Bergeron
My name is Michele Bergeron my husbands name is Robbie Bergeron. We are the hearing parents of a two year old Deaf child named Lennon.
Lennon was given the newborn hearing screening in the hospital. When he didn’t pass it, initially the technician said it was probably fluid and that they would try again the next day. The next day he still wasn’t “passing” the test. They then told us this sometimes happens and to come back in a week for a follow up appointment. The third test he still didn’t “pass” and we were referred to an ENT to have an ABR (auditory brainstem response test).
During the 2 hr ABR test the technicians were whispering back and forth not saying much to me finally I was informed that Lennon was identified as being bilaterally profoundly Deaf.
The technician wouldn’t actually say the word Deaf. She just told me that she was sorry and that he had a significant hearing loss. I was in complete shock. I didn’t know what it meant to be deaf but the way it was being perceived to me was that there was something wrong with my baby.
I was not given any information on Lennon’s hearing level or what the best form of communication was.
We later found out that his cause of Deafness is because his cochleas never fully formed. He has enlarged vestibular aqueducts and incomplete partition type 1.
The drs told us that he was a candidate for cochlear implants. We were told that we didn’t need to learn sign language because he will hear and talk just like any other kid with typical hearing. Lennon had his CI surgery just before he was 9 months old.
We decided to get Lennon CIs because we want to give him all options available to him. My husband and I decided that even with his implants, ASL was still important to us. We want to give Lennon the opportunity to learn spoken English and ASL so that he can make the decision as to which mode of communication he prefers.
Although we continue to work with a speech therapist and offer his CIs on a daily basis. Lennon’s preferred mode of communication is ASL and he has been thriving!
My best advice for other parents with children who are identified as Deaf is # 1 there is nothing wrong with your child. The only difference between deaf people and hearing people is their hearing level. Deaf people are more than capable of living full, happy, and successful lives. #2 ASL is a deaf persons natural and native language. Even if they have amplification devices they are still Deaf. Yes Deaf children can access language and function with hearing devices but they only way for them to have full language access is with a visual language. #3 learning another language is hard but not impossible. I have been learning ASL since my son was born. I have taken classes but what has helped me the most is to be involved with the Deaf community and put myself in the middle of the boat. Not only is it helpful for me but it is helpful for my child to be surrounded by Deaf adult role models and peers who are just like him.
I am thankful that I have been connected with an early intervention program where I live. We have a Deaf and Hard of Hearing teacher who comes to our house once a week. Early start has been a blessing to my family in helping to educate us and introduce us into the Deaf community. Deaf people and the Deaf community have welcomed my family and me with open arms. I feel a deep connection with the Deaf community and I feel grateful that I gave birth to a Deaf child.
