The Surgery

At 1:50 a.m., this morning I woke Sonya up to feed. I know you are never supposed to wake a sleeping baby, but today was an exception. Today was Sonya’s surgery to receive bilateral cochlear implants at NYU, and she was not allowed to consume anything after 2 a.m. As I held her in my arms, I sang to her and promised her that everything would be okay. The calmer I was the calmer she would be. “Put your oxygen mask on first, before assisting others,” I repeated this mantra to myself.

We arrived at the hospital at 5:45 a.m. Sonya was to check in by 6 a.m. to ensure that she would go first (barring any unexpected surgeries). The entire process was seamless. We only had to wait 10 minutes before we were brought into triage. There we dressed Sonya in her hospital gown (the CUTEST thing ever!) and were greeted by a number of nurses as well as our anesthesiologist.

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Our anesthesiologist in particular made me feel at ease. She had been working with our surgeon, Dr. Roland, for more than 15 years. She reviewed Sonya’s file. Asked some questions and then walked us through the process of putting Sonya under. Her tone was direct but also caring. She kept stopping to gush at how cute Sonya looked.

Before we knew it, it was time to go. I sat in a wheel chair with Sonya in my arms as they wheeled us up to the surgical floor. Yan walked beside us. A nurse parked us behind a traffic jam of five other patients also waiting for surgery. Holding Sonya close I repeated my mantra while caressing her hand. I did everything in my power to remain calm. She looked at me and then at the lights above us. Way too soon a nurse asked me for Sonya. I stood up from the wheelchair and gave Sonya a quick kiss on the nose before turning away. I figured lingering would only make things worse. I heard no cry from her. It is possible she cried later, but I believe she remained calm as the nurse carried her into the operating room. A knot of anxiety tightened in my chest.

I suddenly felt light-headed so Yan and I went down to the cafe to have breakfast. I ordered a blueberry muffin and a coffee. We sat in the lounge area and talked about how well Sonya behaved so far. How proud we were. How adorable her hospital gown was…I wondered if we could we buy it after the fact? When we finally went back upstairs a nurse approached us.

Sonya is doing fine, she told us. The doctor did have issues with her IV. She is a chubby little thing – but the IV is in after about 30 minutes of trying. The surgery just started.

Yan squeezed my hand and looked at me with a grimace on his face. I knew what he was thinking. Our poor baby being had surely been poked numerous times by a needle. But I decided to keep things positive. “If that is her only complication – I’ll take it!”

Just an hour later and Dr. Roland himself came into the waiting room. I stood up and he gave us a two thumbs up sign of relief and signaled us to follow him back into a private room. Sonya was indeed fine. Everything went very well. We would see her very soon. I felt as if a huge weight had been lifted off my chest. I felt light and so very thankful.

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About 30 minutes later, we were told we could go see Sonya. We followed a nurse into a tiny curtained-off room. Sonya’s ears were covered in an ear-muff-like bandage. Yan said she looked like a Cheburashka – a Russian cartoon character. Sonya had awoken, but had fallen back to sleep by the time we arrived. oxygen was being blown into her face. She looked like she was having a good dream.

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When she woke up an hour later, the reality of the procedure set in. Sonya was frightened and in pain. She screamed while she nursed. It was upsetting. The doctor told the nurse to give her morphine. I hesitated before allowing it, but seeing the level of pain she was obviously in, I conceded. Within a few minutes, Sonya was fast asleep. She slept a good long while before waking in a much better mood. A wonderful nurse stayed with us the entire time. She checked Sonya’s vitals consistently and answered any questions that arose. When Yan left to grab us dinner, she sat with me and we talked about the amazing things that were to come when Sonya would be able to hear.

By 8 p.m., Sonya was doing great. She was eating every couple of hours and was pooping and peeing. All good signs. Her pain was now being managed by infant Tylenol. Her vitals were good as well. We decided she was ready to come home.

Asleep in her bed, I alter between states of relief and fear that she will develop an infection. But above all, I feel grateful. We had the most phenomenal medical care. I emailed our surgeon several times over the weekend with questions and he responded each time in under 10 minutes. Amazing. With the surgery behind us, we have so much to look forward to.

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Testing 1 2 3 – CT Scan FAIL

For the past two days, Sonya and I have been at NYU Langone Hospital in Murray Hill, attempting to get her a CT Scan. Her initial appointment was scheduled for Monday, but it turned out that our ENT had authorized the wrong type of exam – and thankfully, a radiologist noticed and canceled it. Had he not done so, Sonya would have been exposed to radiation for no reason…

We were able to secure an appointment for Thursday at 2:30 p.m. instead. Sonya slept in the UBER on the way over, but when we arrived, she was groggy and still waking up. Her sleep disrupted by the fact that it was 20 degree

One of many UBER rides with Sonya
One of many UBER rides with Sonya

s outside. We waited an hour for the appointment and finally made our way into the room.

The test – a temporal bone scan – would only work if Sonya was perfectly still – a feat that she would only accomplish if in deep sleep.

Of course, as soon as we entered the room, Sonya woke up immediately. Her big grey eyes mesmerized by the lights on the machines and the computers. The room had a glass wall through which you could see another room of technicians and computer screens.

The CT Scanner is about the size of a small car. It consists of a surface to lay upon beneath a circular structure that produced a light breeze. A screen on the scanner displayed Sonya’s name and birthday. Sonya looked so small lying on the base of the machine. I held her hand and stroked her eyebrows and cheeks, hoping to get her to sleep.

Sonya stared at the technicians and when she caught their eye, she smiled. There is just something about this child – she is always working to connect with people. It’s amazing. While Sonya was in a great mood, the technicians had looks of concern on their faces.

As a new mom, I am only getting to know my daughter. While I have cared for her for three and a half months, as she develops, her tastes and moods change. Typically, nursing will accomplish the goal of getting her to sleep, however, so I offered to try that. The technicians put me in a small room and turned the lights down. Sonya immediately took to the breast, sucking voraciously. She takes about 10-15 minutes per side, and every five minutes a technician would peak his or her head through the door – to see how I was doing.

When she had finally finished, Sonya looked up at me with tired red eyes, and milk dribbling down her chin. Were we at home, she would have gone to sleep immediately had I swaddled her and rocked her to sleep – singing Norwegian Wood (she is a Beatles fan!). But here, her eyes darted around the room. She yawned and then stretched – bending backward – her cue to me that she no longer wished to be held. As I continued to hold her in my arms, she kicked and struggled. Then, she pooped. A loud gas and then warmth! It had exploded up her back and onto my pants and sweater.

A technician poked her head back in, “everything okay in here?”

“Yep yep. We are fine. Just going to change the baby and then hopefully she will sleep,” I said. Although I knew that a diaper change was never followed by sleep. The cold baby wipes only disturbed her.

With Sonya changed and dressed (and with poop soaked through my own clothes hastily wiped off with a baby wipe) I held Sonya and walked toward the door as a technician simultaneously opened the door to check back in. She looked at Sonya and frowned.

“Still not sleeping, eh?”

Her disappointment was frustrating. I mean, here I was, covered in baby poop – doing my darndest.

“Nope…we might have to reschedule this test.” And at that minute, Sonya’s head dropped, she produced an enormous belch and a fountain of white curdled milk poured out of her mouth and on to her clothes and my arm.

The technician made a “yikes” face, and then offered us a bit more privacy again.

I sighed and looked at Sonya. She smiled.

Despite my grievances against the U.S. healthcare industry at large – and our ENT who made the earlier mistake, of course – the technicians at NYU were wonderful. They told me that I could come back tomorrow and as soon as Sonya is asleep – they would push other patients aside and attempt to scan her.

On Friday I rushed over to NYU as soon as possible – around noon. Sonya again fell asleep in the car ride, despite my efforts to avoid it. When I wheeled her in, the staff immediately made way for us. Yet, as soon as I put her on the table, her eyes popped back open.

Three hours later I was still struggling to get her to sleep. We returned home in defeat – as Sonya slept happily in the car.

The ABR Test

While I knew Sonya had hearing loss, I didn’t know how profound it was until she did an Auditory Brainstem Response (ABR) test. This test uses a special computer to measure the way Sonya’s hearing nerve responds to different sounds. A much more sophisticated tool than the initial hearing screen done at the hospital, the ABR test required a visit to NYU Audiology just 11 days after Sonya’s birth.

I held Sonya in my arms as a young audiologist attached electrodes to her forehead and above her ears. The audiologist performed a number of tests over the course of 90 minutes. Sonya slept (though she still managed to soil her diaper — which leaked onto me — ah the joys of motherhood…). I held her as still as I possibly could, and watched the computer screen. Waveforms – recording brain activity in response to sound – traveled across the screen. The audiologist remained silent.

ABR

When the test was over, the audiologist gently removed the electrodes from Sonya’s head with warm water. Sonya didn’t even flinch. The audiologist told us she needed to speak with her colleague and would be back momentarily. I prepared for the worst.

When she came back to the room, the audiologist informed us that Sonya had not responded to the test in her left ear and had only marginally responded in the right. She had failed the screening and the test indicates that she is profoundly deaf. Despite my preparation, tears welled up in my eyes. And then something happened that I will never forget. The audiologist’s eyes also welled up with tears. I realized that this was an extremely difficult conversation for her to have as well. “I am so very sorry,” she told me.

I am used to doctors with cold bedside manner. But the audiologist’s inability to hide her emotion – made me feel better. Her empathy was very comforting.

Her hand quickly wiped away a tear and she sniffed. Apologizing awkwardly and unnecessarily, she then explained our options. We could pursue sign language and be part of the deaf community, or we could opt to focus on oral/auditory language. If Sonya did indeed have GJB2 she would likely be an excellent candidate for cochlear implants. If we went that route, she said, we should have Sonya fitted for hearing aids as soon as possible.

The idea of my baby girl wearing hearing aids was too upsetting for words. I couldn’t fathom attaching such devices to her head. And at 11 days? Why? What was the point? But the audiologist held firm. “We have seen significant improvement when babies wear them early,” she said. “The sooner we can stimulate the auditory nerve, the better. It will help her transition to sound much easier when she is implanted with cochlear devices.”

She even offered to give us loaner hearing aids that day and to have hearing aid mold impressions done in the next 10 minutes. But I said I needed to think about it further, and we left. My head spinning as we got back in the UBER to travel uptown. The future seemed so uncertain for Sonya that day. “This is my deaf baby Sonya Rose.” I repeated to myself as I prepared to introduce her to strangers who would stare awkwardly at the huge hearing aids dangling on the sides of her head.

Grieving Hearing Loss

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Postpartum depression hit me hard the days following our homecoming. Not only was my body reeling from the sharp drop in hormone levels, but my mind was processing another loss – my child could not hear.

Such grief came in waves. I would find myself staring at Sonya as she fed. My fingers tracing her perfect silhouette. As I enjoyed a quiet moment of motherhood, I would suddenly remember that she was deaf. My mind churning with what ifs. How would she survive in New York City if she can’t hear? She could get hit by a car! Would she ever be able to get a job? How? Would she be a part of normal society? The hearing aids will look hideous and people will stare. My poor baby who is so beautiful will have ugly devices. Kids will make fun of her, and the biggest most challenging question: how do I tell people? The list ran on and on. I felt like I was drowning.

During my postpartum checkup, my OB advised me to contact the Seleni Institute – a nonprofit organization dedicated to helping women with reproductive and maternal mental health issues. I held onto the number for a number of days. But eventually I knew I could not continue to be a good mom to Sonya with everything I was feeling.

The Seleni Institute has professionals who specialize in helping parents of children with special needs. I knew I didn’t need long-term therapy, rather, a few sessions to help me through this particular rough patch. Dr. Christiane Manzella, PhD, FT is the Seleni Institute’s clinical director and has been a therapist and grief counselor in New York City for more than 20 years. In a recent article she penned for the Institute’s website, she offers a few ways to begin the healing process:

Know that your feelings, whatever they are, are normal. Parents are often relieved to know that feeling deeply disappointed, frustrated, and sad is part of the normal grieving process. It’s important to let yourself feel complex emotions as they come up.

Know that you are not alone. Connecting with other parents of children who have special needs will help you learn that you don’t have to hide your disappointment or go through challenges on your own. Hearing about others’ experiences will help lessen the stigma you may feel about your own complicated emotions.

Surround yourself with support. Keeping grief hidden can harm your overall quality of life and day-to-day coping skills. Find a safe person or place (such as a support group) to discuss your feelings openly.

Expect ups and downs. This is a process that will have many twists and turns. At times you may have a resurgence of grief, especially when other challenges arise. (For example, you may grieve when you become aware of a missed developmental milestone.) But knowing you’re not alone and understanding that your feelings of disappointment, shame, or guilt are perfectly normal can help you work through your grief and develop new coping skills that will improve your life and the life of your child.

– See more at: http://seleni.org/advice-support/article/grieving-when-you-have-a-child-with-special-needs#sthash.bwvipEtv.dpuf

Birth and Deaf

Sonya was born on a sunny Sunday in New York City. Unlike everything that came later, the birth was planned, short and smooth. I was induced at 9 a.m. By 2 p.m., I was given another dose of medication to encourage contractions. At 5 p.m., moderate contractions began and for two hours, my husband was at my side – helping me count through the pain – which really was just uncomfortable at that point.

It wasn’t until 7 p.m. (of course just 10 minutes after my husband left the hospital to grab some dinner) that things got… real. My parents were in the delivery room. My mom was trying to take over my husband’s role and count through the contractions, but she was either too fast or too slow. Then, I started to hyperventilate. My OB told me that for 14 minutes, I experienced true labor. I remember removing the oxogen mask to notify the nurses that I had a very low pain threshold. Like as if they couldn’t tell. I was shaking violently, throwing up in between breaths, and I was only two centimeters dilated. My OB ordered an epidural.

Yes, this trauma was extremely frightening at the time. But it passed so quickly. Once the epidural was in – things moved quickly – and relatively painlessly. I remember feeling a slight pressure around 9 p.m. It was so slight I hesitated before calling the OB.

“You’re ready to go my dear!” She said. By 11:15 p.m. Sonya Rose was born. She was the most beautiful baby I had ever set my eyes upon. Despite the fact that she was only a few seconds old her eyes were open and alert. They set upon my face and I felt her love.

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The time after the birth seems much darker. Physically, we were in a dark room (though it was private!) with a view of another building and just a sliver of sky. I didn’t know if it was day or night. Sonya was wheeled in and she just stared at us from her bassinet. She was perfect. With big grey eyes, a tiny nose and perfect mouth.

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While I struggled with breastfeeding, my own recovery and the psychological trauma that child birth had left behind, my husband was incredible. He cradled Sonya while I struggled or slept. They connected so easily. She was immediately a daddy’s girl.

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Later, Sonya was taken away for her hearing screen. It was a moment I had been dreading for months. I knew my husband and I were both carriers of GJB2 – a non syndromic hearing loss gene. There was a 25 percent chance that Sonya had hearing loss. While she was gone, the hospital served us our dinner. Salmon and cous cous, grilled asparagus, and vanilla ice cream for dessert. I couldn’t eat any of it.

When the nurse came in, she immediately let us know that Sonya had not passed her first hearing screening. “This happens frequently,” she said. “Many babies have amniotic fluid in their ears, which hampers their ability to hear. We will try again tomorrow, but do not be alarmed.”

A deep pit of sadness formed in my throat. Tears welled up in my eyes. I tried to act like everything was fine – no big deal. I agreed with the nurse that we could try again tomorrow, but as soon as she left, I broke down and sobbed. It was unlike any kind of sadness I had ever felt in my life. As much joy as Sonya’s beautiful face brought to my heart, I knew she was deaf. And this knowledge brought intense, dark pain.

The Call

When I was 10 weeks pregnant, I received the call from our OB. I remember I was sitting in my windowless office. There were a dozen red roses on my desk, which had arrived earlier that week from my husband for Valentines Day. He had never sent me flowers at work before – but I suspected he wanted to do something special for me this year.

“Melissa, I am calling to discuss the genetic results from your Counsyl test,” she said. Her tone was alarmingly to the point. “It appears that both you and your husband are carriers of a non-syndromic hearing loss gene called DJB2. This means there is a one-in-four chance that your baby will have hearing loss.”

While Sonya was special from the moment I knew of her existence. I certainly wasn’t expecting her. My husband and I were so happy and in love — having a baby wasn’t the most important thing to us. But, I was eager to finally rid my body of the pill. If a baby came or didn’t come, it was meant to be, I decided.

A month later, my body felt different. My breasts were tender and my stomach churned at the smell of garlic or coffee. I bought a pregnancy test at the pharmacy around the corner and was shocked to see two blue plus signs. I called my mom. I couldn’t believe that my life was going to change so drastically. I was scared at what would happen to my body. I was scared about what would happen to my relationship with my husband. I cried. But beneath the tears my heart beat with excitement and my soul felt light. I was frightened but so very happy at the same time.

The OB said that I had an option of an amnio, though she didn’t recommend it. Such a procedure was risky – and why risk an otherwise perfectly healthy pregnancy? The level of hearing loss was also unknown. The baby could have minor hearing loss that would be fixed by a hearing aid. There was also a chance that the baby would be profoundly deaf (and while this testing was new, most babies with similar genetic mutations had profound deafness). She told me to speak with a genetic counselor and to think about it. I felt an overwhelming and consuming darkness from within. I hung up the phone and went to the bathroom. A sob from deep within my chest seemed to erupt as soon as I closed the stall door.

A week later, my husband and I met with the first of many genetic counselors, who unfortunately had little knowledge of the GJB2 gene mutation we both carried as this mutation was only recently added to the panel test.  My husband – being the rational and logical problem solver that he is – spoke to numerous other geneticists, professors and doctors over the next several months. I tried to join him in the research, but the thought of deafness was so painful to me that I ultimately decided to do what I felt was best for me and for Sonya – and that meant to be in denial. After all, there was still a 75 percent chance that Sonya would either be a carrier of the recessive gene (and therefore it would not be expressed) or that she wouldn’t have it at all. These weren’t terrible odds.