When a profoundly deaf baby is born to hearing parents, how should the family react?

Author Jennifer Rosner with her daughters, Sophia and Juliet

When Jennifer Rosner’s daughter Sophia was born at Stanford Hospital in July 2000, Jennifer fell instantly in love:

“I was calm with our newborn baby girl nestled in the crook of my arm,” Jennifer writes on the first page of her recently published memoir, If A Tree Falls: One Family’s Quest to Hear and Be Heard. “I hadn’t expected to be calm in new motherhood. Yet, here I was with Sophia. Soaked and happy. Anchored by her gaze.”

But when her newborn fails a hearing test a few hours later, Jennifer’s world is turned upside down. Though both Jennifer and her husband are hearing, they find out that Sophia has “severe sensorineural hearing loss,” and that the loss is probably genetic.

And thus begins the quest that Jennifer details in her book to learn more about her ancestry, understand what it was like for some of her Jewish relatives in Eastern Europe to live in silence, and decide what to do to help her child.

When Jennifer cannot find the details about her mother’s family that she seeks, she makes them up, traveling back to the 19th century to imagine her family’s struggles. These musings are interspersed throughout the book, written in the third person, offset by italics.

As Jennifer, Bill, and Sophia fumble to learn American Sign Language together, Sophia is fitted with hearing aids that cost thousands of dollars (and that she delights in taking out of her ears). The family moves to the East Coast where there is an excellent school for the deaf and Sophia gets lots of early intervention with hired tutors.

Then Jennifer and Bill’s second daughter is born.

Juliet is more profoundly deaf than Sophia, her deafness so severe that is not correctable without cochlear implants.

Jennifer is devastated.

“My baby couldn’t hear me,” she writes. “And she wasn’t looking at me either. Whatever competence I felt as a mother the second time around–I was skilled now at newborn feeding and diapering and bathing and swaddling–was undermined by Juliet’s inexplicable arching, by her distant gaze, by the unknown degree of her hearing loss …

How were we going to relate to each other? All my worries about motherhood were back, strong as ever. With Juliet here, I’d be less available for Sophia. Juggling two, I’d be less focused than with one. And my girls’ deafness, on top of everything else, was like an enduring signpost of my own impediments to hearing, to connection and closeness.”

Though Jennifer renews her determination to learn to sign, the lessons don’t go well. Bill, who has had trouble bonding with this second daughter, sits through the weekly sessions barely moving.

“At some point Bill’s hands became cracked and torn, and no amount of lotion, cream, or even prescribed medication could heal them. It may have been the bottle washing, compounded by the New England dryness. Or it may have been my anger–at the way his hands weren’t signing with Juliet–that had its way with them.”

Jennifer and her husband agonize over what to do for their second born.

“Once again, we faced a decision between manual and oral communication approaches, between Deafness and Hearing, as we had with Sophia three years ago. But whereas Sophia’s hearing loss was ‘severe,’ Juliet’s was ‘profound.’ To be ‘oral,’ Juliet would have to undergo the cochlear implant surgery, and then, with extensive training, her ‘hearing’ would proceed electronically. Still, there were many considerations that we faced in Sophia’s case that were the same in Juliet’s: only .02 percent of people in US are fluent in American Sign Language, compared to the 99.98 percent of people who used spoken language. If we could place Juliet in the hearing world, we would be giving her the chance to communicate with the larger, hearing population. And not only with the larger population, but with Sophia, who was acquiring some Sign, but it was clear that she learned–and flourished–as a hearing, speaking, ‘oral’ child. And with us: we wanted our relationship, our intimacy, with Juliet.”

Cynthia, the family’s Deaf teacher, believes they are making the wrong decision. Here’s what happens after Jennifer tells Cynthia they have scheduled Juliet for cochlear implant surgery:

“Cynthia froze her face. Actually she froze half of it. Somehow, she immobilized the left half of her face, while the right half took on distorted, changing forms of expression. Her right eyebrow arched, her right cheek dimpled, her right lip curled down, all while the left half of her face remained expressionless and flat. I knew she was illustrating the paralysis that the implant surgery could cause. The surgery is done in the vicinity of a facial nerve, and the surgeon cited facial paralysis as a rare but possible side effect. I felt my own face freeze in response to Cynthia’s illustration, and we said a rushed goodbye.

“After that Cynthia stopped coming. She didn’t answer our emails, our faxes, or our TTY calls. Almost weekly, Sophia would ask, ‘Where’s Cynthia? What happened to Cynthia?’

“We didn’t explain to Sophia that our decision to give Juliet surgical access to sound was an offense to Cynthia. An insult in its suggestion that deafness was something to fix–eradicate, even–no matter its risks. Selfish of us, according to Cynthia, presumptuous to ‘change’ our baby, to embark on a surgery, when she was healthy and well.”

If a Tree Falls is beautiful, raw, painful, hard to read.

I found the flashbacks a little jarring and overwritten but the front story narrative is totally compelling.

I especially appreciate how honestly Jennifer explores her relationship with her mother, whose own hearing loss is made manifest by her granddaughters’.

I loaned the book to my friend, Marisa Soboleski.

Marisa’s reaction to the book was very different than mine, and she graciously gave me permission to publish it here:

I finished the book you loaned me. Jennifer writes very beautifully. She truly is a very devoted mother. Some parts were quite hard for me to swallow–seeing the way a hearing person would view a deaf child. It’s not the way I look at the world. I felt like she was very focused on her daughters’ ability to hear/speak and how they would participate as functioning members of society. I understand her fears, but most of the words she chose made it sound like her children weren’t whole (and even outright said so in one part). I am certain she intended for it to come across that way. Sometimes we don’t realize the (let me think of the english word for this–I can only think of the ASL way for this) layers of expectations we as a society put on our children.

I try to remind people to avoid using words like ‘impaired’ or ‘hearing loss’ unless the person was late-deafened. People who were born deaf, like me and the author’s two girls, haven’t lost anything. There have been discussions about deafness and how we are viewed in this society. I believe it has much to do with self-image. Some people could look at me as if I’m missing something or as if I have less of something. But in fact,-when someone doesn’t have one of their senses, all their other senses are so much stronger. I’m very aware of my surroundings. I’ve also learned where to step up to assert myself and which battles to let go of. I’ve stopped pointing to my ear and telling people that I can’t hear–and instead I’ve started telling them that I sign and communicate with my hands/body and I am pleased with the response I get now.

Culturally, we could really use a paradigm shift in the way we view things.

And that brings me to a point.

I remember doing a search on Mothering.com for anything related to deafness. I found an article a deaf woman’s lament on about how she’ll never hear her child’s voice, the birds sing, and that sort of thing. It made me frustrated that she was so focused on what we couldn’t do rather than what we CAN do…and because of that, I really wanted to write an article about how beautifully attachment parenting works for people who are deaf, blind, or disabled. I guess that will be a goal somewhere down the road. (One cool fact– the blue international breastfeeding symbol was designed by a deaf man.) (and another cool fact-there is a statue/sculpture of a little boy with the ‘i love you’ handsign in downtown ashland.)

I know that the use of invasive technology really depends on the person. It works fine for some people, as long as they have full access to whatever resource/way of communication they need. In this case, it’s my own view on insurance companies and big pharmaceutical companies and their intentions. They won’t cover accommodations like hearing aids, but will cover $40-80,000 experimental surgeries on babies that may require repetitive surgeries, infections, re-mapping, errors, recalls, and so on…and not to mention the dependency on batteries.

Nearly all of my (adult) friends who were implanted as children don’t wear them at all anymore, and wished that their parents waited until they could make that decision for themselves because they’re the ones who have to live with a scar.

Sierra can decide for herself (after extensive research) when she is much older.

I prefer to focus on her self-efficacy and esteem rather than how well she can hear or speak (that part is up to her).

Many doctors argue that the younger the child is implanted, the better the outcome. That is a myth.

In the author’s case–decisions have already been made and her kids will grow up just wonderfully. She is very involved, devoted, and passionate. The outcome will always be good–it’s not the technology or the accommodations that make up the child. It’s the investment and energy the caretaker puts in.

I see that you have traveled/lived internationally. I have as well. The way I see it, many deaf people are culturally different from your typical American–nothing more or less. I had an easier time communicating with people all over the world than I do with my own neighbor here in the US. I think it’s the exposure to various cultures and languages make people open up and connect on a different level.

This book made me realize how much I care about communicating with other people, and helped strengthen my resolve to learn to sign.

Reading about Jennifer’s struggles also saddened me, not because her girls were born deaf, but because she was so hard on herself as a mother, and so worried about how they would fare.

I won’t tell you what happens with Juliet’s surgery. For that you’ll have to read the book! But I would love to hear your thoughts on cochlear implants, learning to sign, oral versus manual communication, or what it’s like to be hearing with a deaf child or deaf with a hearing child. I hope you’ll share your ideas in the comment section below.

Disclosure: Jennifer Rosner and I met a million years ago when we were both teaching at Mt Holyoke College (she in Philosophy, I in English). She was pregnant with Juliet. I went to Juliet’s baby party when she was just a few weeks old. Jennifer sent me two free copies of the book.

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20 Responses to When a profoundly deaf baby is born to hearing parents, how should the family react?

  • YourPlusSizePregnancy
    July 24, 2011

    Wow. This is moving and fascinating. I will definitely read the book.

  • Your PlusSizePregnancy
    July 24, 2011

    Wow. This is moving and fascinating. I will definitely read the book.

  • Melanie @ Frugal Kiwi
    July 24, 2011

    Whether or not someone chooses to have a child implanted with a cochlear implant is a profound family decision. The one issue I’ve struggled with, as a professional who has worked with cochlear implants, people with hearing loss and the Deaf, is the idea that a child who is born with little hearing BELONGS to the Deaf community. To me, that child, first and foremost belongs to their FAMILY and their family should make informed decisions where to proceed from there.

    I don’t think there is a right or wrong answer, only what the family decides is best for their child in their particular situation. None of the paths will be quick-fix or easy and a tremendous amount of support will be needed for the child and the family no matter which way the family chooses to go.

    • Grace
      July 24, 2011

      I completely understand what you’re saying. Of course the baby belongs to the family. but the family would be wise to listen to the Deaf Community to find out what adult Deaf people have to say about the issue. Many have had an implant and they can tell the family exactly what’s involved, how it’s affected them, etc. Additionally, if it’s not a life-saving procedure, I can’t (personally) see justifying a possibly paralyzing procedure simply because the mom thinks signing is too hard, or assumes that because her daughter can’t hear that’s she’s incomplete, or that she can’t bond with her.
      Granted, my children both hear just fine (a little too well during naptime, actually…), so I can’t say I have been in the author’s shoes. But I have spoken with members of the Deaf Community who would have much rather had parents who signed and accepted them as they were, than parents who tried to fix them and tried to make them fit into the Hearing world.
      Grace recently posted…New Theme: Piano BlackMy Profile

      • Melanie @ Frugal Kiwi
        July 25, 2011

        Grace, I think that speaking with adult members of the Deaf community should be part of the decision making process. Otherwise, how can a family who has never been exposed to Deaf culture make an informed choice?

        Even if a family decides to go ahead with a CI, it doesn’t mean that it will work well for their child. This has happened to my cousin’s child. Even though he has a CI, ASL is his first language and he is certainly a Deaf child.
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  • Grace
    July 24, 2011

    As a former student of ASL interpreting, I am definitely intrigued by this. Having spent a great deal of time with people in the Deaf Community, I have very similar feelings as Marisa–that there is a misunderstanding among Hearing parents of Deaf children, of their being incomplete; or assuming that they can’t connect, communicate, or bond with their children. I have spoken with many a Deaf person whose parents ignored or even shunned their child because of their inability to understand that Deafness is more than something to “fix” and that it is not an impediment to bonding or communication. On the other hand, I have seen Hearing parents of Deaf children who dove right in and learned to sign, got involved in local Deaf Community events/programs/associations, and had no lapse in their bond with the child.

    I also have a friend whose daughter became deaf (little “d” intentional) after a bout with meningitis at 18 months old, and they were very quick to get the Cochlear Implant. Now, however, she rarely uses her CI, signs more than she speaks orally, her parents use mostly sign to communicate with her, and she is more “Deaf” (culturally) than “deaf” (medically). I believe that, if they had the chance to go back, they would not have bothered to get the CI and would have gone in head first into signing and the Deaf Community.

    That being said, I think ultimately it’s the *individual’s* choice, not the parents, whether or not they want to get an implant. So when they are of age to decide, they can decide for themselves. And until then, they can use what God gave them and what comes naturally to them. This phrase, I think is the epitome of parenting *any* variety of child: “The outcome will always be good–it’s not the technology or the accommodations that make up the child. It’s the investment and energy the caretaker puts in.”

    Sorry for the rambling, but I just have such a heart for the Deaf Community that I find it hard to stay silent about these things.

    –Grace

  • 6512 and growing
    July 24, 2011

    Jennifer,
    Thanks for this thoughtful book review. I look forward to reading Jennifer Rosner’s story.
    I think it’s completely natural and normal for a parent to want their child to have every opportunity that any other child would.
    4 years ago several doctors recommended that my son have a feeding tube inserted into his stomach because he was extremely small and not a good eater (also, he was born @ 25 weeks). My husband and I were always looking for the “magic bullet” and surgery was somewhat tempting (and terrifying). We eventually declined the surgery. My son is still very small for his age, and may or may not catch up. We’re learning to celebrate his abilities and shrug off his differences.

  • Alexandra
    July 24, 2011

    This was so moving. It made me realize, yet again, how fortunate parents of normal children are. Being a mother or father is not easy, but reading about what a parent of a deaf child goes through in making such decisions, puts it all in perspective.

  • Sheryl
    July 24, 2011

    So interesting to learn what it is like to raise Deaf children. I cannot possibly relate to this struggle, but can certainly empathize with the daily difficulties as well as the long-term implications of implants.

  • Toni diLeo
    July 24, 2011

    There was a very interesting story on “This American Life” about a man who had cochlear implants for a time and decided to have them removed because all that ” noise” was too distracting. Check it out. You can buy the “This American Life” app for your iPad or phone.

  • Living Large
    July 25, 2011

    Did the mother write about the decision to have a second child, knowing that the condition their first child had was genetic? I’ve always wondered about that in families.
    Living Large recently posted…Life’s Defining MomentsMy Profile

  • Jennifer
    July 25, 2011

    Thanks, Jennifer, for this blog post. Today is Sophia’s 11th birthday – and Marissa’s thoughts and the comments here are prompting me to post. As my daughters’ grow and flourish, I am incredibly grateful for the choices that were open to us and that we made – to give Sophia and Juliet access to sound and spoken language. I wish the whole world knew Sign (we, as a family, continue to learn it so that we can communicate with the Deaf people we meet) but the miserable truth is that only a very small fraction of people will work to communicate with the Deaf in Sign and this reality results in seriously limited opportunities for Deaf people. Deaf culture and Sign language hold great beauty, and there is much to admire in the Deaf community. I hope that my girls will find acceptance in that community if they desire it – though we have already met some who shun them for their hearing status. The outcomes for our girls (that came from the choices we made for them as babies to give them hearing technology) could NOT have waited for their own autonomous judgments– there is substantial evidence that the success (and integration) of implants is far higher when done before 18 months. And for them, their experiences ARE integrated – they want their sound by day, and enjoy the break from sound at night. As I watch my girls — they are thriving, at home, bonding with friends (hearing and deaf), achieving in school – I feel thankful. I would have another baby in a heartbeat (though we still feel sleep-deprived even this many years out!) And I still revel in the amazing fact that Sophia and Juliet can hear a woodpecker, can pick up a trumpet and match a D note, can catch a snippet of conversation when they are turned away; but most of all, that they can communicate with a wide range of speakers as they grow up in this wide, wide world .

    • Helen
      October 25, 2012

      I want to say that throwaway comments about myths should not go unchallenged. Doctors say the earlier the implant the better the outcome. This is not a myth, extensive research carried out over the last 30 years has proved that to become oral in any meaningful way implants are necessary as early as possible. This does not stop the child using sign or removing the external parts later. To be deaf in a deaf culture is empowering and enabling but to be deaf in a hearing family is isolating and if the child is removed to be given a deaf culture the family loses the child.

  • Susan
    July 25, 2011

    I can’t even imagine how hard that must for that family. My mother is deaf in one ear and she hates wearing hearing aids. But her deafness is more comical than tragic because she sometimes uses it to not hear what she doesn’t want to hear. She still has hearing in one ear so we just have to make sure to speak clearly into her good ear.

  • Alisa Bowman
    July 25, 2011

    This was fascinating, especially the two differing reviews from a hearing and deaf person. We are all as whole and as happy as we make up our minds to be (to very loosely quote Abe Lincoln, I believe, who wasn’t the happiest camper, but wise nonetheless). I think Marisa’s review is enlightening. Thanks for including it.
    Alisa Bowman recently posted…How to Extinguish Anger, Part 1My Profile

  • Jane Boursaw
    July 25, 2011

    Fascinating, and I appreciate your update about how things are going, Jennifer Rosner. A local family had five deaf children, and it always amazes me how well everyone coped through the years. My husband and I are friends with the kids, and even though we didn’t know sign language in the beginning, we found a way to communicate with the kids almost as if they weren’t deaf. We didn’t know any better. :-)
    Jane Boursaw recently posted…Gene Wilder Recaptures Childhood with AT&T CommercialMy Profile

  • Jeanine Barone
    July 25, 2011

    Thanks for such a thoughtful review. The books sounds fascinating and I’m considering buying it.

  • Kristen
    July 25, 2011

    Such an interesting discussion. My MIL learned ASL to communicate with a deaf student that wanted to participate in her high school theatre program. After she got to know the student well she decided to shift a play and have all of the characters sign and then have someone else on the side of the stage vocalize what they were saying. It was an amazing experience for all those involved.
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  • Roxanne
    July 26, 2011

    Not being a parent, it’s hard for me to weigh in on that angle, but the points about how we perceive such situations are quite taken. When it’s something we covet, we do tend to focus on the “haves.” When it’s something we fear, we do tend to focus on the “have nots.”
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  • merr
    July 27, 2011

    As a parent, reading this post and the comments made me realize, once again, how varying opinions can be about the same exact issue. One begins to questions oneself or defend one’s opinion. I think this can be one of the most challenging parts of being a parent of any child, and something most parents have faced at one time or another.

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