“My ear hurts mommy.”
“Which ear honey? Do both ears hurt?”
“No, silly. This one doesn’t hurt. It’s not open. It’s teeny tiny.”
Olivia was 3 and this was the first time that I knew of that she noticed that her right ear didn’t match the left. We had never made a big deal out of Olivia’s ear difference or hearing loss. At two and a half she asked to have her ears pierced to match her big sister and we gladly obliged. Most days she wears her hair in two cute little pigtails that stick out just right and like most little girls she spends hours spinning and twirling in front of the mirror while wearing princess dress up clothes while admiring herself.
I knew that day was coming that she would notice that God made her ear different. From the moment I saw her referral photo I dreaded that day. Like all parents, I never wanted my daughter to feel hurt, shame, disappointment or that she is anything less than God’s perfect beautiful creation. But, today was different. It was so matter of fact. So confident and so Olivia. What was there to worry about? My girl has got this. Oh do I wish I had her attitude!
On September 25, 2012 we received our referral for a beautiful 14 month old little girl. The moment we saw her photo my husband knew she was ours. Me, I’m the researcher and when I saw the words: “aural atresia, ear deformity and unilateral hearing loss,” I wasn’t as sure as he was. I didn’t remember checking any of those things on the dreaded special needs checklist that all adoptive parents have to fill out. I am a pediatric occupational therapist so I have worked with children with many special needs but, hearing loss is one that I have little to no experience with. I immediately started googling and found “Microtia.” There are a number of websites and on-line groups that quickly set my mind at ease about adopting a child with this special need. Our son’s ENT reviewed the file and also gave us reassurance. Within 12 hours we told our agency “Yes” and within 24 hours we had Pre-Approval from China. Olivia was ours.
On January 28th, 2013 we finally held our gorgeous girl in our arms and one of the first things we fell in love with was her crooked little smile.
We have learned a lot about Microtia and unilateral hearing loss in the almost 3 years since we received our little girl’s referral. These are a few of my most frequently asked questions regarding Microtia/Atresia and Unilateral Hearing Loss.
1. What is Microtia and Atresia?
Microtia is a congenital deformity affecting the outer ear (pinna) where the ear does not fully develop during the first trimester of pregnancy. According to this website, Microtia occurs in every 1 out of 6,000 to 12,000 births. The right ear is more commonly affected. Microtia is often accompanied by Atresia. Atresia is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones may be affected including the narrowing of the ear canal, known as canal stenosis.
2. What type of doctors will I need to see?
The first doctors we saw when we came home were an ENT and audiologist. The ENT did a brief exam and recommended we see a craniofacial surgeon. The audiologist did an ABR (Auditory Brainstem Response) test to check the hearing on her (right) Microtia side. Olivia did not need to be sedated for this but, many young children do. The audiologist also did booth testing to be sure that Olivia had average hearing in her left, unaffected side.
When we saw the craniofacial surgeon, he took measurements of Olivia’s Microtia ear, jaw and facial structures. He informed us that Olivia has a syndrome called has Hemifacial Microsomia. This occurs when the jaw bone on the Microtia side is smaller than the jaw bone other side. (*As a point of additional information, Hemifacial Microsomia and Microtia/Atresia can also be related to Treacher Collins Syndrome. Olivia does not have Treacher Collins Syndrome so I cannot provide insight into this additional diagnosis.)
With this new Hemifacial Microsomia diagnosis we were referred to a pediatric dentist and orthodontist. Thankfully, the pediatric dentist my older children have seen for years has experience with Hemifacial Microsomia so we did not have to find a new dentist. On our first visit she took x-rays of Olivia’s jaw and teeth. In addition she took multiple pictures of Olivia’s face from all angles. We found out at that appointment that Olivia is missing a lower tooth, apparently something common with Hemifacial Microsomia. It is not yet known if she will have all of her grown up teeth. The dentist advised us that Olivia may or may not need future surgery to expand her jaw. She did jokingly tell us to start saving for braces. We will have photos and x-rays repeated yearly to accurately track her growth and development.
Just before Olivia turned three we decided to take her to a well-known craniofacial team about 3 hours from our home. We had been taking her to multiple physicians and wanted to take her somewhere where all members of the team could collaborate. This was the best decision we could have made and I would encourage that all families of a child with several diagnoses seek out this type of collaborative approach. Olivia now has a craniofacial surgeon, an ENT, two speech therapists and an audiologist all under one roof. When we went to that initial appointment Olivia gained an additional diagnosis of Velopharyngeal Insufficiency (VPI). Basically, Olivia has low muscle tone on her Microtia side. This is the same low muscle tone that causes her bright smile to be crooked. The palate on that side does not contract during non-nasal sounds so air escapes through her nose. We will return to see the team yearly unless new issues arise sooner.
3. Will my child need Speech Therapy?
Olivia came home at 14 months. Within the first 10 days of having her in China she had between 10 -15 English words and was gaining new words daily. Shortly after coming home we decided to have her evaluated by our local early intervention program. The speech therapist noted that she had slight language and articulation delays and because English was not her first language and she had hearing loss, we decided to begin therapy. Olivia received 9 months of weekly speech therapy in our home. Olivia is now back in speech therapy for her Velopharyngeal Insufficiency diagnosis. She works on activities to strengthen her palate in hopes of avoiding surgical intervention later.
4. Will my child need a hearing aid?
Maybe. A child with Bilateral Microtia/Atresia will need to be aided. A child with unilateral Microtia/Atresia like Olivia may or may not need to be aided. We chose not to aide Olivia for the first two years she was home. Olivia gained above average language skills quickly. She seemed to hear well both in quiet and public settings. After beginning speech therapy for VPI, we noticed Olivia was making minimal progress. In addition, she started mis-hearing beginning and endings of simple words we were saying. We discussed these issues with the audiologist and as a team we decided to do a trial with a hearing amplification device called at Bone Anchored Hearing Aide (BAHA). Within the first few days, Olivia’s nasality was improving and she no longer was mis-hearing our words. Her speech therapist was in shock at the improvement. We are currently in the process of getting Olivia her own BAHA. In our case this is not covered by insurance but, many insurance plans do cover hearing devices. In addition there are many grants and forms of financial assistance available.
5. What is your biggest piece of advice when adopting a child with Microtia/Atresia or Unilateral Hearing Loss?
Connect! Just after receiving Olivia’s referral I met another mom on Facebook. I had been reading her blog for a long time but, never realized her daughter had Microtia. I reached out to her and she was a huge source of support to me. This mom was the one I sought comfort from both the day Olivia noticed her “teeny tiny” ear and the first day she wore her BAHA. She is always willing to give advice or support or just say, “I know. I get it.” I have not yet had to navigate the world of IEP’s or school accommodations but, I know who I will turn to when that day comes. I would suggest that if you are considering any type of special needs adoption you seek out a support person or support group specific to the need with which you are matched.
After you connect, advocate. Advocate for your child. I regret that it took us almost 2 years to find Olivia a team that truly understood her needs. We spent too many hours seeing doctors with poor bedside manners that didn’t understand her diagnoses. Find a team you love and stick with them. They will be a part of your child’s life for a long time.
Finally, don’t allow yourself to minimize your child’s struggles by comparing yourself to others. Yes, be thankful that he or she is not medically fragile, chronically sick, or facing multiple hospital visits. But, you are dealing with an above-average number of specialists. There are emotional issues related to your child’s adoption, to the difference in appearance of the Microtia and/or related syndromes. And learning to cope with any level of hearing loss is a significant learning curve. It’s okay to feel overwhelmed, tired or isolate, like others “just don’t get it.” This is, again, where a support community is so important.
These are some of the girls from our local adoption group. These girls and their mamas are such a source of support to me.
6. What is daily life like for a child with hearing loss?
Daily life is crazy. I have three kids who are aged 7, 5 and 3 and a bonus child who happens to be my 6′ 6″ loud and energetic husband. Our days are filled with laughter, playing, fighting and finding adventure wherever we go. After our initial year home, our doctors’ visits decreased drastically. Yes, once a week we go to speech therapy and a couple of times a year we trek a few hours to see her team. But, most days we function like many other families and Olivia’s hearing loss has become our new normal.
Hide and seek isn’t a favorite game in our house. Due to Olivia’s unilateral loss she is unable to localize sounds. Early on when we were working on building attachment, we made sure to always let Olivia know what room we were in. She could not find us based solely on the sound of our voices and that made her nervous. Her pre-school teachers know to sit on her left side during one-on-one instruction time and that she may not hear them on the noisy playground when it’s time to line up. These are all simple accommodations that have truly just become our norm and we don’t think about them much on a daily basis anymore.
Whether it’s Microtia/Atresia, Unilateral Hearing Loss or any other special need, you will find that from the moment your child is placed in your arms he or she is “yours”. Her special need will no longer define her as it often does while you are researching and waiting for her to come home. Once home, she is simply your beloved child.
– guest post by Caitlin