Personal Challenges

by K. C. Wells

  A nurse had come in a few minutes ago to give Nathan the sedative via an oral syringe, and it hadn’t taken long before he’d fallen asleep in Will’s arms. Dr. Michaels was in the process of cleaning the skin on Nathan’s forehead and behind each ear. She’d explained that was where the electrodes needed to be placed to measure Nathan’s responses. She attached some little sticky pads to each site, secured the cables, and inserted the tiny earphones into Nathan’s ear canals.

  She’d already gone through exactly what would happen during the test and how long it would last, so they knew what to expect. Blake’s gaze was focused on the laptop screen where the results would be displayed. He and Will were silent, watching as the doctor went through the test. Blake didn’t think time could possibly move any slower as he watched the screen fill with a series of lines. Periodically Dr. Michaels would click something on the screen and the tracings would start all over again.

  Nearly an hour and a half later Dr. Michaels turned toward them. “We’re finished.”

  Blake exhaled shakily.

  She nodded, and he got the feeling she was used to this reaction. “Okay, let’s clean off this little man, and then we’ll talk.” Dr. Michaels spoke softly as she removed the insert headphones, unclipped the electrodes and carefully removed the pads from Nathan’s delicate skin. Nathan made an unhappy noise while she wiped his face, and Blake wanted to pick him up and hold him against his heart.

  “I’ll take him,” Will said quietly, scooping him up and wrapping a blanket around him, the one they’d brought from his cot at home. Will had figured the familiar scent would provide Nathan with some comfort. They followed Dr. Michaels from the small room into her office, where they sat on the couch where they’d previously discussed the tests. The doctor retook the armchair, a tablet on her lap.

  Will cradled Nathan in his arms, his gazed flitting from him to Dr. Michaels. Blake said nothing but waited for whatever was coming at them.

  “Well, the ABR test ran with great accuracy, and I’m now able to give you a diagnosis.” Her cool blue eyes focused on Blake. “Nathan has Auditory Neuropathy Spectrum Disorder, or ANSD for short. The previous tests didn’t pick up on it because with ANSD most of the structures of the ear are healthy.”

  She paused there, and Blake was glad of the breathing space. Because she’d just dropped a bombshell that he was finding difficult to take in. He has a disorder. There really is something wrong with his hearing. Not that Blake hadn’t known that, deep down, but hearing their fears confirmed left him with a sour taste in his mouth and a dull ache in his chest.

  In desperation he latched onto her last words. “You said most.”

  She nodded. “The simplest way to describe it is that there’s a disconnect between the inner hair cells of the cochlea and the auditory nerve, or there’s a malformed nerve altogether.”

  “How bad is it?” Will blurted out. Blake stretched out his hand to lay it on Will’s thigh, needing the connection.

  Dr. Michaels didn’t break eye contact. “Nathan’s case is severe.” She scrolled over the tablet screen and then held it up for them to see. “This is an example of an ABR with normal hearing.”

  Blake stared at the lines, a series of jagged waves with peaks and troughs.

  She scrolled again, and then turned the screen once more. “This is Nathan’s ABR. As you can see, other than this brief response at the very beginning that originates from the inner ear itself, which we call the cochlear microphonic, the lines are basically flat or at best slightly wavy. That’s because there’s no response from the auditory nerve.”

  Cold spread out from Blake’s core, sending icy tingles through his body. “He’s deaf?”

  She nodded, her eyes kind.

  In that second it didn’t matter to the logical part of Blake’s brain that there would most likely be solutions to improve that situation. All he could think was that his son would never hear his dads’ voices.

  Blake wanted to weep.

  * * * * * *

  With that one statement, a numbness descended over Will as he saw Nathan’s life change before his eyes. Then the numbness ebbed away as a shockwave of grief crashed over him. His chest ached and his body felt cold. Oh my God. He’s a baby. He isn’t even two months old and this changes everything.

  “Now tell us the solutions.” The tremor in Blake’s voice betrayed what he was clearly trying not to show. Will was glad one of them had their wits about them. “Are we talking hearing aids?”

  Dr. Michaels cleared her throat. “For severe ANSD our options are more restricted than with other forms of hearing loss. One thing we know is that a traditional hearing aid is not very effective. They are designed to make sounds louder, but for someone who can’t process sound, all it gives them is loud noise—not communication.”

  “So what’s the bottom line?” Blake demanded.

  Dr. Michaels spoke softly, exuding a calm Will certainly did not feel. “There is the option of teaching him sign language, using cochlear implants, or a combination of the two.”

  Will widened his eyes. “Implants? That would mean surgery.” His gaze dropped to Nathan and he shivered. “He’s just a baby.” His eyes met Blake’s. This isn’t happening.

  Blake opened his mouth to say something but Dr. Michaels cleared her throat again. “I know this is hard to take in, so let me give you some examples. I have several patients with ANSD who use different approaches. One little boy’s parents decided not to use hearing aids or go down the CI—cochlear implant—route, and he communicates via BSL—British Sign Language.”

  “What about a patient similar to Nathan?” Will demanded. “With similar hearing loss?” He would deal with grief later, because that was exactly what it felt like. Blake was correct: right then they needed solutions.

  “I have a little girl who has a severe case of ANSD. She wears an implant. With it on, she can communicate with relative ease. I am not saying she can hear perfectly, but it’s efficient. Without it, she’s deaf.”

  There it was again, that one word that made Will want to cry.

  “What would be your suggestion in Nathan’s case?” Blake wanted to know.

  Deborah studied her tablet for a moment. “If it were my little boy, I’d go down the CI route and teach him sign language. Yes, the implants are expensive, but I’d be recommending them whether I worked on Harley Street or not.” She met their gazes. “Do you have any questions?”

  “What caused this? How come Nathan has this ANSD in the first place?” Will’s voice shook slightly.

  “That’s a good question. However, although a lot of research has taken place during the last decade, we still don’t completely understand what causes it.”

  “Then how can you be sure he has it?”

  Her calm manner didn’t change. “There are a number of common causes of hearing loss in infants, none of which apply to Nathan. He hasn’t had a virus like Meningitis. He doesn’t suffer from a genetic disorder. And he wasn’t born prematurely, so we can rule out the side effects of medications used to treat complications in immature organs.” She placed the tablet on the small table beside her. “That leaves us with ANSD. The results from the ABR confirm the diagnosis.” She leaned forward, her elbows on her knees. “Is there anything else you want to ask me?”

  Will glanced at Blake. “I… I just need to get my head around all of this.” It was too much. His head was spinning, and all he wanted to do was get home, bar the door and hide away from the world with Blake and their kids.

  “That’s a common reaction, believe me,” she said kindly. “I know this is a shock, but we need to act quickly in Nathan’s best interests. The sooner we set wheels in motion to give him the tools he’ll need to communicate, the better.”

  Will knew she was right, but he didn’t want to think about the options.

  In that moment, he didn’t want to think at all.

  “Is there any information you can give us to take away and digest?” Blake asked. “Because I do
n’t think either of us is in any fit state of mind to be making decisions right this second.”

  Will swallowed and looked to Blake, nodding in agreement. I can’t deal with this right now.

  Dr. Michaels nodded too. “I will give you leaflets and links to various sites where you can find out more, but I’m going to stress that you don’t leave it too long before you get back to me. And unlike a first consultation, you don’t have to wait long for an appointment. When you call me and tell me you’re ready to discuss Nathan’s treatment, I will see you within forty-eight hours. That is how importantly I view this.” She paused. “It’s a lot to take in, I know. The leaflets will tell you about the implantation procedure, and the links show examples of children who’ve been through it.” She smiled. “And when you see some of the videos, I guarantee you will feel better about the whole process.”

  Will focused on Blake. I need to get out of here. His mind had slipped into overdrive.

  Blake nodded, as if he’d heard the unspoken words. He gave Dr. Michaels his attention. “We’ll take the information, and then we’ll discuss it at home. I promise you, we won’t leave it too long. Neither of us wants to see Nathan suffer any more than he has to.”

  Will didn’t want to consider the possibility of Nathan suffering for one fucking second.

  Chapter Twelve

  Will was a mess.

  Ever since they’d arrived home, his emotions had been all over the place. For one thing, he had no appetite whatsoever, and judging by how Blake had pushed his food around his plate, neither did he. Will had done his damnedest not to let Sophie pick up on his state of mind, but when she’d run to him with one of her favourite books, demanding that he read to her, the words wouldn’t keep still on the page, and he’d felt sure he was on the point of losing it.

  Thank God for Blake, who’d taken one glance at his face and come over to the couch where Will and Sophie were seated, his arms wide, pleading for a Sophie hug. Will flashed him a grateful look and escaped to the kitchen. He’d leaned against the sink, staring out into the garden beyond the window.

  This still doesn’t feel real.

  It felt like it was happening to someone else. Not them. Having a deaf child was something that happened to other fucking people, damn it!

  When he’d regained his composure, he drank a glass of water and walked into the lounge to spend time with his family.

  Thinking could wait. Right then he had a daughter to read to.

  * * * * * *

  Blake had no idea what had awoken him. He rolled over to look at the alarm clock beside the bed—Will’s side of the bed, except Will wasn’t there. Blake rubbed his eyes. It was three in the morning. He hadn’t had all that much sleep to begin with: he recalled seeing midnight come and go.

  Not all that surprising, really. There was way too much on his mind to sleep.

  He swung his legs over the side of the bed and reached for the robe he’d left on top of the covers. April was definitely not warm enough for walking around the house naked in the early hours. He pulled it on, got up and walked over to the bathroom door. One peek inside told him Will wasn’t there. As he left their room, he peered into the children’s bedrooms. Sophie was fast asleep in her usual position, on her tummy, knees drawn up under her, bottom in the air, making a little blanket-covered mound. How she managed to sleep like that, Blake had no idea.

  Nathan lay on his back, the blankets still on top of him, his small arms above his head as though he had thrown them up in protest in his sleep. His night light was on, an LED-lit baby bunny that sat next to his cot, a soft glow emanating from it. Blake crept into his room and stood at the foot of the cot, gazing at his infant son.

  I promise you, I will do whatever I can for you, so that you’ll have the best chance in life.

  He blew his baby a silent kiss and then crept out of the room, pulling the door closed behind him.

  Now to find Will.

  Blake padded down the stairs, noting the blueish light that slid under the door to Will’s writing cave. He pushed it open and poked his head around. Will sat at his desk, his head in his hands, and the air of dejection that clung to him was almost tangible. The light came from the computer monitor.

  Christ, look at him. He looks like I feel.

  “Baby?”

  Will jerked his head up, blinking. “What are you doing up?” he whispered.

  Blake came into the room. “I could ask you the same question,” he said softly. “What are you looking at? How long have you been here?”

  Will sagged into the swivel chair. “An hour or so. I couldn’t sleep. You’d finally dropped off and I didn’t want to wake you with all my tossing and turning, so I came down here.” He gestured to the leaflets on the desk next to the keyboard. “I was reading them again.”

  Blake’s chest tightened. “Oh, love.” They’d spent all evening reading and re-reading the information, and yet Blake felt like he’d retained only a fraction of it. Underlying that thought was the knowledge that Dr. Michaels didn’t want them to delay, which only added to the pressure. Not to mention the churning in his stomach.

  “Then I started doing some research into cochlear implants.” Will shook his head. “I feel like Alice and I’ve just fallen down the rabbit hole.”

  “Why? What did you find?” Blake walked over to where Will sat and crouched beside him, gazing at the bright screen.

  “I found plenty about the risks involved in the surgery, but we’d already read about those. No, what shook me was reading messages on a forum.” Will flicked his head toward the chair behind Blake. “Pull up a seat. You’re going to need to be sitting down for this.”

  Blake had the feeling he wasn’t going to like what Will had found.

  Will scrubbed his fingers through his hair. “Okay, we can forget about the hearing aids vs cochlear implants arguments, and believe me, that’s a good thing, because there are huge threads on that topic alone. I came across a forum where parents were asking questions about implants. Usually parents whose child had just been diagnosed, and they wanted advice from people who’d been there.”

  “Okay.” Blake could understand that. Once the shock had worn off, he’d had about three million questions of his own. Who better to ask than people who’ve already been where we’re about to tread?

  Will clicked on a link. “A lot of parents on this site believed their doctors were prescribing treatment by implants because they’re in it for the money. Not that I think that for one second about Dr. Michaels.”

  “I agree.” Blake trusted Dr. Rollins’s recommendation.

  “There were quite a few of these people who were saying how highly invasive the surgery was, how the risks were more severe than the docs made out, how in some cases the surgery didn’t work. There’s probably some truth hidden in there. Dr. Michaels said it wasn’t perfect, right?” He took a deep breath. “The kicker was this message from a woman who was deaf.”

  Will shivered, and Blake grabbed his hand. “Carry on.”

  Will’s face glowed in the cool light from the screen. “Her whole tack was anger that these parents had reacted as if being deaf was a disease, a bad thing, something that should make them sad. She was challenging the way they saw their child’s hearing loss. Basically she was saying that there is nothing wrong with being deaf. What was wrong was how people perceived it as a terminal illness.”

  “I think terminal illness is a bit overboard.” Blake was genuinely puzzled. “But I can totally understand those parents. They’re facing a future where they can’t communicate with their own kids, and in this world, communication is vital.”

  Will nodded. “Her argument was that parents are too quick to jump on the implant bandwagon, and too lazy to be bothered to learn sign language. She said the parents should embrace their child’s deafness, and not brush it off.” He swallowed. “Because she said the child would remember this as he or she grows up.”

  It was Blake’s turn to take a deep breath. “We talked a
bout this, right? We’re going to learn sign language, and we are going to make sure Nathan learns too, as soon as he can.” He cocked his head to one side. “That was what we decided, wasn’t it? The implants and sign language?” When Will didn’t respond, Blake sighed. “Okay, you need to tell me what you’re thinking here.”

  Will pulled his hand free and clicked the mouse to close the link. He swivelled in his chair to face Blake. “There’s this whole Deaf culture out there, Blake. There are people who argue that while we might be shocked by the diagnosis, shocked that our ‘perfect’ baby isn’t perfect after all, that’s just us judging the situation by the standards we’re used to. They argue that deafness isn’t harmful, and that yes, our baby is still perfect, and that our job as parents is to make him or her feel perfect.” He shook his head. “I learned some new words today. Audism. Audistic. Being audistic is being prejudiced based on hearing status. These people claim that doctors ignore the option of raising a child as culturally deaf.”

  Blake stared at him. “What?”

  Will nodded. “They claim doctors believe that speaking is the be-all end-all. There was a huge discussion about how society places a lot of emphasis on hearing and speaking, to the point where many hearing people see it as the only way to truly have language. So along comes a hearing parent, with little or no knowledge of the Deaf community, and they panic, thinking they’re not going to be able to communicate with their child. The experts recommend implants and they go along with it, because deep down they want to hear their child’s voice, they want their child to hear their voice.”

  “So in going down the CI route, we’re just being selfish?” Blake asked incredulously. Will nodded, and Blake set his jaw. “Fine. Then call me selfish, because I want that. I want Nathan to know what we sound like. I want him to be able to communicate by signs and by speech.” He rubbed over his face.