Katherine Baldwin

Katherine Baldwin lives in the Northglenn area with her husband, Robert, and three hard-of-hearing children. Robert is also hard-of-hearing. "We are the proud and sometimes dazed parents of Henry (age 10), Richard (age 4), and Sophie (age 1).  I am a Parent Regional Coordinator and Guide by Your Side (GBYS) for the Denver metro area." 

Favorite Quotes:

The Baldwin Family:  Love, Surprises, and Genetics

By Katherine Baldwin

Henry, the Firstborn and the Discovery

When Robert and I were expecting our first child, we were not thinking about the possibility that our baby could be deaf or hard of hearing. Although Robert had been hard of hearing since childhood (probably since birth), there was no other family history, and he had not been diagnosed with a genetic disorder. There was no family history on my side either. Actually, we thought the odds were against it, since most deaf and hard of hearing individuals have hearing children. However, in one way, I was preparing for having a deaf child.  Because Robert’s career was bringing him into the world of deaf and hard-of-hearing individuals who use sign language, I had been taking an introductory ASL class during my pregnancy to be able to communicate with his new friends and colleagues. 

Henry was born on New Year’s Eve at Johns Hopkins Hospital in Baltimore. After 17 hours of labor, we were thrilled to welcome this little person into our lives. We were overcome with joy as we saw his face for the first time, and we were thankful that he was healthy. It was exciting and nerve-wracking at the same time to suddenly be new parents. Neither of our families lived anywhere close, so it was just the three of us during the days in the hospital. 

Almost as soon as Henry was born, Robert noticed the first clue that Henry might have hearing loss. Robert saw a tiny hole on each side of Henry’s neck. My husband had also had one of these – called branchial cleft remnants – and had had surgery to close it when he was about 12 years old. Upon closer examination, Robert noticed that Henry also had a tiny circular pit on the top part of each ear. Again, these were familiar to Robert because he had had them, and they had been surgically removed as a child.  He showed them to me, and I was curious, but I didn’t think they would have anything to do with hearing loss.  When our pediatrician came to visit us in the hospital, Robert showed these anomalies to him, and our doctor went back to his office computer to do some research. 

Henry was born before universal newborn hearing screening debuted in Maryland, but since Robert was hard of hearing, the doctors requested a hearing screen before discharging us from the hospital. Over the New Year holiday, a pediatric audiologist was not available until right before we were discharged. Robert, in the first year of his doctoral program in psychology at Gallaudet University, was very interested in watching the screening, so he went with the audiologist allowed him to the testing room. I stayed back in my hospital room, preparing to leave as soon as they returned.  I can honestly say that I wasn’t at all concerned about the test and fully expected Henry to pass it.

Twenty minutes or so went by and they had not come back.  The housekeeper was anxious to get in and clean my room. I told her why I was waiting, and I started to think, “This is taking longer than I thought….”  I asked the nurse near our doorway if she knew where my husband and baby were for the hearing test. As I was asking her, I heard a door open down the hall. I turned to see Robert with a look on his face that is hard to describe, but one I’ll never forget.  It was a look of surprise mixed with a hint of pride. As I approached him, I said, “What is it?”  Robert said, “He didn’t pass.  The audiologist screened him several times and it looks like he has hearing loss in both ears like me.” 

It was in that instant that I understood the look on Robert’s face….it was pride because his son was like him. Hearing people might find this difficult to understand since to most hearing people, hearing loss is a disability, and how could anyone with a disability want to pass it on to their child? Yet somehow, I did understand. Robert would have this in common with his son. And based on Robert’s own experience, as well as his developing friendships with deaf and hard of hearing students and professors at Gallaudet, he felt that things would be okay.

I can’t say that I had the same feelings as Robert did. I’m sure his feelings were mixed – some combination of surprised, proud, curious, and probably somewhat concerned. Mine looked more like this – stunned, worried, sad, conflicted, overwhelmed, and yes, even devastated. My darling baby boy had a challenge to overcome right at the start of his life. Henry would have hearing aids (he would be teased); he might have trouble with speech and language (he would be teased and would have trouble in school); he was going to be different from the other kids (he would be angry, frustrated, left out). There was part of me that was comforted by the knowledge that Robert had already overcome these challenges, and was a successful, happy, well-adjusted person. But in the first hours following the screening, I was dwelling on the feelings of fear and sadness. Yet at the same time I was ashamed of those feelings, and I didn’t want to insult the love of my life by sharing these darker thoughts with Robert. In time, I was able to, but at first, I kept my worries and fear to myself. 

Across the miles, the news of Henry’s birth and his hearing screen was settling in with our families. Robert’s parents and siblings were curious and surprised, but they felt confident that Henry would be fine. Later, Robert’s mom would tell me that as a mother, she very much related to my feelings of sadness and deep concern. She knew from the beginning that this would be harder for me to deal with than it would be for Robert. 

My parents were packing their bags to come see their first grandchild. Robert had told them on the phone about the hearing screen, but when my parents arrived, they clearly were not ready to talk about it. They said they wanted to focus on meeting baby Henry on this brief visit, and they did not want to talk about his hearing loss yet. My parents’ reaction surprised me a little because I knew how much confidence they had in Robert, and that they knew we would do our best to see that Henry had everything he needed to counterbalance any challenges brought on by the hearing loss. But I also understood where they were coming from because in a deep place within me, I wanted to be in denial too. I wanted to pretend for a while that Henry was just a beautiful, healthy, typical baby. 

Robert was baffled, hurt, and disappointed by my parents’ initial response.  I think it was hard for Robert not to take their response personally – although their response was certainly not intended to produce this result, it felt like a rejection and indictment of an important part of who he was. Before meeting Robert, I remember seeing a TV program called Sound and Fury about a multigenerational family that had some members with hearing loss.   The program featured the turmoil occurring when deaf family members had hearing children, and even more so when hearing family members had deaf children. I remember that at the time I found it difficult to understand how the people in this program could get so upset and angry with each other. I can see now how families can be divided and even torn apart by these intense feelings. It doesn’t have to stay that way, though, and in our case, we all worked through these feelings, talked about them, and moved on. 

One interesting contrast that came out of Henry’s diagnosis is worth mentioning here. Robert told me that when Henry was in the nursery at the hospital, Robert observed a few nurses standing behind his bassinet clapping their hands, looking at Henry for a reaction, and shaking their heads sadly. I guess the nurses knew about the family history, and that Henry would be screened for hearing loss. Their reaction was one of pity for the child and his family. Just about a week after Henry’s birth, Robert returned to Gallaudet to get back to his coursework. When he told his fellow students and professors about Henry and his hearing loss, he received joyous pats on the back and hearty congratulations. Henry’s hearing loss was something to celebrate!

Again, it might be really hard for us hearing folks to understand how celebrating a child’s hearing loss could be anything but selfish on the part of deaf/hard-of-hearing individuals. It boils down to this:  Relationships are all about communication – without full and uninhibited communication, it is much harder for people to build relationships. In meeting and talking with a number of deaf people over the years, I’ve learned that many deaf individuals who grew up in hearing families felt disconnected and even isolated in their own families because of inadequate communication. I feel that this is why some deaf people celebrate deafness being “passed on” within a family – it creates a bond – a shared experience, and some assurance that the child will not feel like an alien in their own family. Similarly, I believe this is why many hearing parents and their families are so scared of deafness. We don’t want anything to separate us from our baby. And we certainly don’t want to feel that we will need to “turn our baby over” to the deaf community, with which we have no connection, in order for our child to have meaningful relationships.

In a way, this is what deaf parents (who use ASL as their primary mode of communication) face when they have hearing children. The world is a hearing place. Yes, a parent and a child can communicate love without words, but to build a relationship with your child, parents need to be able to communicate fully and easily so they can teach, share values, and get to know their child’s unique personality. Hearing children of deaf parents might learn sign language from an early age, and this helps them develop strong, loving relationships with their families. But in some sense, they will be separated from their deaf parents and other deaf family members because of the fact that they are hearing. So I can understand that just as hearing families usually hope to have hearing children, deaf families often hope to have deaf children.

Part II:  Henry and the Genes: Diagnostics

At our first follow-up visit with the pediatrician, Henry (and Robert) was diagnosed with Branchio-Oto-Renal Syndrome. It is a rare syndrome that includes some degree of hearing loss in 95% of people who have it. Henry was diagnosed with severe-profound hearing loss in both ears. Other characteristics include branchial cleft remnants, ear pits, and (in only about 15% of people) some kidney malformation. Henry’s kidneys were checked by ultrasound, and were found to be normal. We learned that it is even more rare that neither of Robert’s parents had been diagnosed with the genetic syndrome, since it is autosomal dominant. This means that at least one parent must have the syndrome to pass it on to a child, and with each pregnancy, there is a 50/50 chance that the child will have the syndrome. Neither of Robert’s siblings have the syndrome.

Almost 6 years later, we would discover that Robert’s father probably had the syndrome.  In the final hours of his father’s life, Robert’s mom noticed a small ear pit on Robert’s dad’s left ear.  No one had ever noticed it before. It seems that Robert’s dad was one of the 5% of people with the syndrome who don’t have hearing loss.

Part III:  Henry -- Intervention and the Problem with “Generic Services”

Henry’s hearing loss was mixed, but mostly conductive, so he was not eligible for a cochlear implant.  This was a relief to me because I didn’t want to have to go through the process of deciding whether or not to get one. Henry was fitted for hearing aids at around 3 months of age.  They were not fitting many babies with digital hearing aids at the time because there was no research to support their use, so he was fitted with analog hearing aids. We didn’t know how much of a difference digital hearing aids could make, so we didn’t insist on getting them either. I remember hearing about them, but the cost was SO out of our ballpark, that we simply put aside the thought of getting them. If I had it to do over again, though, I would have moved mountains to get them because I think having digital hearing aids would have made a big difference in Henry’s early years of language development. 

Faced with the unexpected cost of purchasing hearing aids, the audiologist gave us a form to fill out for funding assistance. We received the funding, so we had to spend around $200 – plus the cost of the ear molds. We were fortunate to have a pediatric audiologist, but unfortunately, he was not very helpful when it came to connecting us with early intervention (or Part C) services in Baltimore. The audiologist was a kind and gentle man, but not the best communicator, and his expertise was limited to the medical and technological aspects of hearing loss. I’m sure this was and still is standard for many audiologists. The ENT doctor also focused exclusively on the medical aspects of Henry’s diagnosis. Our wonderful pediatrician, in whom we had total confidence, also was not equipped with information about taking the next step from diagnosis and amplification to language and speech services. And finally, despite the fact that Robert was hard-of-hearing and I had a background in social work, neither of us realized that we had not been referred to Part C until Henry was seven months old and someone from Gallaudet mentioned it to Robert.  

Looking back, maybe we didn’t realize it because we were madly adjusting to new parenthood, baby-sized hearing aids, batteries, and earmolds, while trying to keep up with full-time graduate school (Robert) and full-time work (Katherine). As I remember that time, I can’t help but be baffled as to how single parents, people with many more challenges in their lives, and folks with no knowledge of or experience with hearing loss  could navigate ‘the system’ in Baltimore.  Things may have gone more smoothly for others than it did for us, but I would be surprised.

Once we found the right phone number and called the Part C office, we were told we had to wait 3 months until school started as they worked on a school year calendar. It would be a general evaluation of his development, and the person doing the testing did not have a background in hearing loss. Since this was all new to us, we had no idea what we were missing! At any rate, he qualified for services and they informed us that although he was “pretty young to start services” (wasn’t this supposed to be early intervention?!), we could enroll him in a program that was housed in a school in the city. As far as we knew, there were no other options.  Henry was 9 months old.

As soon as we visited the program and heard about the hours, we knew it wasn’t right for us.  The program was three days a week from 9-11:30am. Not only were the hours impossible since Robert was in school and I was working full-time, but the program only offered 15 minutes of time devoted to speech and language. The rest of the time was spent working on gross and fine motor skills, which Henry didn’t need. There were no professionals with expertise in deafness in the program; Henry would be the only child in the program with hearing loss, and the only baby in the class.  It just wasn’t an appropriate match for Henry’s needs. 

Feeling frustrated by the lack of appropriate early intervention, Robert found out from some of his colleagues at Gallaudet that Henry should be eligible for in-home speech therapy. This was news to us, but we pursued it with our service coordinator, who reluctantly set it up for us. The young, fresh-out-of-school therapist was friendly and consistent, but she acknowledged up front that she did not have experience with kids with hearing loss. I remember the sessions being harmless, but not particularly helpful. I sat on the sidelines watching her “work” with Henry.  But I was thankful to have someone coming to my home, and was very thankful that my employer was flexible and supportive, and allowed me to be at home for the sessions.

One major support that was missing from our lives was parent-to-parent support. The only option for us to meet other parents was to travel to the Maryland School for the Deaf, which was about forty minutes away.  I went down for a parent class once, but it just didn’t click with me, and I was so busy with work that it just didn’t seem worth it. I wish I had not given up on it so easily because I think making those connections would have been good for our family.

Early on, we didn’t worry very much about Henry’s speech and language development. We used both speech and sign language at home, and initially, Henry seemed to be developing language at a normal rate. Unfortunately, without appropriate early intervention, by around two and a half, we were seeing that Henry’s language was not going to just “pop into place” like it had with Robert. Mistakenly, I’d assumed that if Robert had been fine after being diagnosed very late at age 4, Henry’s development would move right along thanks to early identification. This was a classic example of how early identification alone isn’t the key to success. Thankfully, Henry received good Part B services in Rochester, New York when we were there for a year. It was in Rochester where we (finally!) learned of the benefits of an FM system. When he was four and a half, we moved to Colorado, where Henry got digital hearing aids and fully competent audiology and speech services, and he entered an excellent deaf/hard-of-hearing preschool.  In addition, our family had become active members in Hands and Voices, a wonderful source of parent-to-parent support and information to help us every step of the way. We were able to connect with numerous other families who were going through similar experiences. Once all these pieces came together, our anxieties decreased, and Henry’s language and overall development took off!  By the time he settled into a regular kindergarten class (with some supports), he was able to keep up with his hearing peers, and has been at or above grade level ever since.  It hasn’t always been easy, and he still struggles some with his speech, but Henry’s come a very long way, and we are very proud of him.

Part IV:  Richard, the Secondborn -- Identification and Diagnosis

We welcomed our second child, Richard, in 2004. Our identification and early intervention experiences with him have been drastically different! In Colorado, there is a coordinated, collaborative, comprehensive system for kids with hearing loss and their families. Through the Colorado Home Intervention Program (CHIP), Hands & Voices, and audiology services from Children’s Hospital and the University of Colorado, I believe we have experienced the high quality of care that all families should have access to. 

Richard had the newborn hearing screening in the hospital. This time we knew that there was a 50/50 chance our baby would have the syndrome. Since Henry had struggled so much early on with his speech and language development, and he had needed two surgeries to close his branchial cleft remnants, we were hoping that our baby would not have the syndrome. But, at the same time, we were confident that if our baby did have the syndrome, we were in the best place in the world. We knew we would have access to many helpful resources from day one, as well as a supportive community of deaf and hard of hearing individuals and families with kids with hearing loss.

Richard was born on his due date after less than three hours in the hospital. That was the first surprise. We didn’t know if we were having a boy or a girl, so that was the second surprise.  Once again -- almost immediately after the birth -- Robert observed that our baby had the branchial cleft remnants on his neck and the ear pits. This time, we knew that these markers meant that Richard would almost certainly have hearing loss, but what we didn’t know yet was what degree of hearing loss it would be. 

Initially, Richard’s right ear passed the hearing screen, but upon further evaluation, it was determined that he had a mild loss in his right ear and a mild-moderate loss in his left ear. There was more of a sensorineural component in Richard’s hearing loss, but with digital hearing aids he would be able to have close to normal hearing (in perfect situations). Since we were prepared from the beginning of the pregnancy for the very good chance our baby would have hearing loss, our reaction to his diagnosis was much less dramatic. We were all thankful that Richard had mild hearing loss, and we were hoping that it meant he wouldn’t struggle so much with developing language.  He was fitted for hearing aids by 8 weeks – and because of the loaner bank, he received the best digital hearing aids available.  We were very thankful that when it was time to return the loaner aids, we learned that an organization was prepared to donate his hearing aids.

Part V:  Richard -- Intervention with an Experienced Professional

As soon as Richard was referred from the hospital screening, our audiologist referred us to a CoHear. CoHears are experienced professionals in the field of early childhood hearing loss, and meet with families to explain the system and talk about early intervention options. Within a week of Richard’s birth, we’d received a call from the program, and within another week, we had a visit by the CO-Hear in our home. We decided to go with the Colorado Home Intervention Program (CHIP), and have a facilitator work with us in our home. Our CHIP facilitator was highly trained in child development, with specific knowledge about hearing loss and all related technology, intervention strategies and resources for family support -- including sources of funding assistance.  We were already members of Hands and Voices, so we had the immediate support and friendship from other families. But if for some reason we hadn’t known about Hands and Voices, we would have been offered a chance to have another parent call us to “check in” and to encourage us to make connections with other families.  What a difference from our previous experience in Baltimore – where we had been left to make our own clumsy way through the system -- where the various components of the system were completely disconnected, and where opportunities to meet and share with other families were very limited!

Richard thrived with the early intervention services. Our early interventionist (CHIP facilitator) tailored her activities to Richard’s needs and interests, and she involved me directly in all the activities.  Instead of sitting by and watching like I had done with Henry, I was actively involved with Richard’s intervention, which is what early intervention is supposed to look like.  In addition, our facilitator did periodic assessments of his development in all areas, with particular attention given to assessing his speech and language development.  This assessment included a video taped portion, which was analyzed for language content and quality.  Whenever possible, the assessment tools were those that had norms for hearing children as well as hard of hearing children so that we knew exactly how Richard was doing compared to his peers.  We had so much great information!  It made me sad only because I knew how much this information might have helped Henry since this was something that was very much missing in our early intervention experience with Henry.  (Henry had been assessed once or twice in his first 3 years, but the tools they used had been developed based only on hearing children, and the tests were administered by someone who knew little to nothing about hearing loss, so it was hard for us to get a real sense of how he was doing.) 

In addition to the weekly visit from the CHIP facilitator, we had a sign language instructor come in twice a month for several months.  The only thing I’ve struggled with is that Richard seems to hear so much without his hearing aids, and his speech and language has come along so easily, I haven’t been very good about making him wear his hearing aids. I have felt guilty and ashamed about this since I really should ‘know better,” but I’m willing to admit that I haven’t felt strongly that he’s needed them.  This September, Richard began preschool at a centerbased program, where his older brother is in the 4th grade. Now that he’s in school, Richard is wearing his hearing aids more regularly, so I feel better about it. I guess we’ll see down the road if my casual attitude about him wearing them was a huge mistake, but looking at how he’s doing right now, I feel confident that Richard will be a happy and successful preschooler.  Recently, his teachers reported a significant difference in Richard’s participation in class when he’s wearing vs. not wearing his aids.  I’ve become more vigilant about it.

Part VI:  Sophie, Our Little Girl – Identification and Diagnosis

In April 2007, we welcomed a baby girl into our home. We knew that with 50/50 odds, there was a very high probability that Sophie would have BOR, so we were fully prepared for it, but I had hoped that maybe our third and final child would be born without the syndrome. Many people, including some in my own family, were under the impression that the syndrome only occurred in boys, so when we found out we were having a girl, some friends and family assumed she would not have it. However, as soon as she was born, Robert noticed the pre-auricular pits on her ears, and one branchial cleft remnant on her neck. Sophie had the hearing screen in the hospital, and was referred for an audiological evaluation. Like Richard, Sophie has mild-moderate hearing loss in one ear and mild loss in the other. 

Part VII:  Early Intervention for Sophie….and Some Unexpected Emotions

Within weeks of her birth, Sophie received early intervention services (CHIP), and she received her loaner hearing aids at around 10 weeks of age.  Again, when it was time to return the loaners, we were very fortunate that funding was available (this time from our local Part C office) to pay for her hearing aids.  I certainly hope that the legislation requiring medical insurance plans to cover hearing aids for children gets signed into law here in Colorado this year.  Hearing aids have a life expectancy of about 5 years, so if it doesn’t pass, we’re looking at some serious bills at the Baldwin home with four sets to buy every 5 years!! 

We are feeling good about the services and supports that we have in place for Sophie, and we are confident that she will be fine. I am finding, however, that for some reason, I’m more sensitive about the way strangers react to her when she’s wearing her hearing aids than I was with my boys. I don’t know if it’s sexism on my part, or if it is a reflection of a deeply buried desire to have a typical hearing child. I just don’t like the difference in the way strangers react to her when she is wearing her hearing aids versus when she is not.  In general, when Sophie goes “aidless” and we’re out running errands in my community, people are very friendly to her (and to me), smile and talk to her, and compliment her. However, when she is wearing the hearing aids, people are much more subdued, and some even have abruptly stopped speaking to her when they notice the hearing aids in her ears. You’d think after being married to a hard-of-hearing person for eleven years and having two other kids with hearing aids this wouldn’t bother me, but it does. I am especially annoyed by the look that comes across their faces and it makes me cringe – it’s pity. With Henry and Richard, I usually enjoyed being the “advocate/educator mom” when it came to introducing my deaf kids to the world.  If I saw that “look”, or if I sensed someone was uncomfortable, I was happy to explain this part of who they are.  I’m not sure why it’s different this time. I think with time, I’ll re-adjust, but for now, it’s a bit of a struggle for me. 

Good thing we have our families and our friendships -- especially with other parents -- because I know they’ll be there for us through all the ups and downs!