Decisions, Decisions

So, it's been a while since I updated but that's because saying that "Brynn is mostly the same" doesn't make for interesting blog posts. Still, Brynn is growing, and I promise I will post some pictures soon. Below is a rather long-winded travelogue mostly for Brynn's, Matt's, and my remembrance; but I share it here for any curious readers or parents of deaf children.

First, I'll give a short update on the various parts of Brynn's development; and second, an explanation of the weighty decision surrounding Brynn's deafness.

Eyes: Still totally normal. ROP is completely gone and the retinas are permanently attached. Sometimes I still sit in awe to realize she could have been both deaf and blind. Wow.

Ears: Completely deaf in both ears--at all frequencies and all decibels. She showed no response when given sound bursts at the equivalent of standing behind a jet engine. It is virtually impossible to be more deaf than Brynn is.

Growth: Still very small and skinny for her gestational age--but looks healthy and happy and is gaining weight on her own curve so I'm not worried. She just turned 10 months real age (6.5 months corrected) and she is wearing some 0-3 month clothes, some 3-6 month clothes, and a rare 6-9 month outfit or two. She is still in size 1 diapers, but I think we'll move to size 2 soon. We haven't weighed her for a while but I think she's somewhere around 15 lbs.

Eating by Mouth: She still gets virtually no nutrition by mouth but things are seeming to go in a slow, upward direction. She now loves fingers, toys, blankets, shirts, mom's arm, and even some taste tests of different flavors like cashews and bananas; but she still hates to swallow anything. As soon as the tiniest thing--liquid or solid--goes past her mid tongue, she heads into a coughing/gagging fit that often leads to retching. To avoid further trauma and negative associations, we try not to push her much.

Lungs: Although we thought reflux and gastro issues were the main problems causing her vomiting, coughing, and gagging, we recently discovered that it was in fact her LUNGS that have been at the root. Since this discovery, I've often asked myself, "Did we do an unnecessary fundo?" But alas, that's one of those questions that will never have an answer and there's no turning back now, anyway, if it did. I try really hard not to dwell on the "what ifs" or regrets for that major surgery. That said, she does seem to have slightly improved with her retching and coughing as we toy with different lung-treatments.

In a nutshell, what's been happening with the pulmonary system is that she's been aspirating (i.e. saliva and/or reflux were going down the wrong pipe). When most children aspirate, the fluids go all the way into the lungs, creating problems with pneumonia, difficulty breathing, and increased oxygen needs. However, in Brynn's case, her lungs were so clear and looked so good in all her X-rays, no one suspected that problem. But she is, indeed, aspirating. Instead of letting the substances go all the way into her lungs, however, she is only letting them go into her vocal chords and airway. It's not life-threatening, and she will eventually outgrow the problem, but it does cause inflammation and irritation in the meantime. As such, it has been the cause of most (if not all) of her coughing, gagging, and vomiting. Apparently, it's something the Pulmonologist sees a lot in kids with feeding tubes because they don't get practice swallowing like normal kids do. Without the practice, the neurology just doesn't make the body handle substance in the mouth and throat correctly. I'm looking forward to when she has outgrown it since we will finally be able to make some oral progress.

Motor Development: Brynn is a few months behind in her motor skills. I thought that meant she'd be a few months behind for all her normal milestones, but I recently learned that it's not usually the case. Usually, it's a percentage. So since she's rolling over and doing things most 3-4-month-old children do at her corrected age of 6.5 months, that means she's 50% behind. So when most kids are crawling by 8 months, she will be crawling by 16 months--provided all continues to go well. So, lucky me, it seems I won't have to baby proof nearly as early as most moms! And hey, I figure that most parents wish they could have savored their children's early years, anyway, because those years go so fast, right? This slight delay in development just means I just get the opportunity to savor her childhood for longer!

Well, I think that's all the little updates. Now on to explaining our upcoming major decision.

Navigating "the Decision" of the Decade for the Deaf Community and Parents of Deaf Children:

For those not aware, a little-known world exists that calls itself "Deaf." Whereas the term "deaf" means a person has a physical inability to hear, the term "Deaf" means a person has chosen to identify himself or herself with a culture of other Deaf people. Many hearing people are concerned with this culture because it carries with it some negative implications--promiscuity, entitlement attitude, welfare dependence, drug experimentation, and homosexual lifestyles. Gossip is a particularly poisonous problem among many Deaf members.

But the Deaf love their culture and I am just now beginning to really understand why.

As a parent, I'll admit I was (and still am) concerned about a difference in both the morals and the values between the mainstream Deaf culture and my own LDS culture. But I suppose mainstream American culture shares many of the same attitudes, anyway, and I almost wonder if all the "hype" is just people's tendency to focus on the worst. After all, strictly speaking from my own limited experience, the ratio of good, hardworking Deaf people to those who have (in my very limited judgment) made dysfunctional, self-limiting, and morally-questionable choices seems to be about the same ratio I see in the hearing world. So I suppose we'll just have to do the best we can just like other parents to educate Brynn on the principles of Happiness and then let her decide for herself whether she chooses to be part of the Deaf, hearing, LDS, or some combination of cultures.

Anyway, I've recently had some realizations that have helped me understand the Deaf culture better. It seems to me that it all boils down to how one defines the problem of deafness.

Most hearing people think the biggest challenge of deafness is that the person is unable to hear. If you can make them hear--or at least function as a hearing person via lip-reading and speech drills--you can overcome all the challenges of deafness.

But if you ask a Deaf person what the biggest challenge of deafness is, they will tell you a different story. They say the biggest challenge of deafness is the feeling of isolation. To illustrate, when asked which of her senses she'd prefer if she could choose just one, Helen Keller said, "Blindness separates you from things, but deafness separates you from people."

Here are some statistics to illustrate:

• 90% of deaf children are born to hearing parents
• 1-10% of mothers learn sign language. I've heard it estimated that only 0.3% of fathers learn.
• Because most hearing parents' situations do not allow moving to a deaf school, around 80% of the students are essentially raised by the dorm employees. The students live at the school Monday through Friday.
• I've heard it said from several places that molestation and sexual abuse run rampant in the deaf schools and deaf camps--with older students and dorm monitors both being the perpetrators. Rumors? I don't know. Scary prospect? Absolutely.
• At home on the weekends, because their family can't communicate with them, most children are completely isolated from parental or familial influence. Sure they can understand a motion to "pass the salt," but for the most part, dinner conversations go on without them while they sit in silence.

Often those who end up at Deaf schools are there because they failed at reaching their parents' first wish--to function as a hearing person. The parents' ideal has often been to create what they consider to be a "fully functional" deaf person by giving them every opportunity to hear, learn and communicate in English. To do this, they give them hearing aids and cochlear implants, put them in oral-only programs that require absolutely no use of sign language for fear it might impede their desire to learn to communicate with their voices.

These are not bad parents. They are good people trying to solve the problem as they see it--overcome the inability to hear and the rest will take care of itself.

Unfortunately for many of the Deaf that wind up in Deaf schools, those "solutions" have only compounded the feeling of isolation--spending childhood in an Audiologists' office instead of the playground, having to wear a hearing aid or cochlear implant and be teased by the other children (they used to hang down in a large, heavy box on the chest instead of the smaller more discreet options they have today), and enduring "oral only" programs that they ultimately failed.

One woman fought back the tears as she related a story to me (in ASL) about how the teachers at her oral school required her parents to use NO sign language at home. She was never able to progress with her speech or her understanding of English and it wasn't until she was 9 years old that she was considered a "lost cause" and moved to a sign language program. In this new program, her mother was finally allowed to say "I love you" for the first time in a manner that this woman could understand.

As for the Deaf students whose parents wanted them "mainstreamed" in hearing schools, they have to go through their school years with a full-time interpreter. This interpreter relays everything from classroom instruction to adolescent conversations and jokes. Talk about awkward for any teenager to have to do! I can only imagine the isolation the students in this category feel.

I do not mean to suggest people had ill intent, or that hearing aids, cochlear implants, or stressing oral communication is a bad approach. For many deaf people, these approaches have opened many doors of opportunity to live and work in a dominantly hearing world. But I do mean to illustrate that many Deaf have ended up feeling bitter about being forced to conform to a hearing world when it neither came naturally nor comfortably to them. The people that lacked the talent for lip reading and mechanical speech (just like some people lack artistic or mathematic talent) failed these programs and grapple with feelings of inadequacy for the rest of their lives.

Finding comfort and solace in a community of similar people, making friends with people who understood their struggles, and discovering the joy of uninhibited human-to-human interaction, these deaf people become absolutely loyal to their language--ASL--and to their culture--the Deaf. Regardless of their private or moral choices, what glues these people together is that common connection.

The Deaf are, for the most part, wonderful people. They have faced incredible odds and have come out fighting. They welcome anyone that wants to learn their language with open arms. They are endlessly patient with me and everyone else who tries to learn ASL as we stumble through our attempts at communication. They are tolerant. They are social. They are incredibly intelligent.

I love the Deaf.

Which is why it's extremely hard to make a decision for Brynn that so many of them will disagree with and misjudge me for. Not all--but many--Deaf feel as though a hearing person giving a deaf child a cochlear implant is the same as a Deaf parent giving their hearing child surgery to remove the cochlea. Deaf think it's a hearing parent's way of not "accepting their child for who they are." And even worse, they think you are robbing the child of the right to choose. They say that if the child wants a cochlear implant, they can go at age 18 and get one.

But from a medical person's standpoint, there is only a small window of time where the brain actually learns to process, and make sense of sound. That window is between birth and 3 years old. If a parent waits much past that age, the chances of a cochlear implant succeeding go WAY down. Now in some cases, the child can have access to sound without undergoing surgery by using a hearing aid or other sound amplification technique. Still other children don't lose their hearing until after age 2, when the brain has already learned to process sound. In those cases, you could conceivably wait until the child is older; but in Brynn's circumstance, to wait would be to shut her off completely from that opportunity.

In essence, under the guise of not forcing her to become hearing, I would actually be forcing her to give up that option if she did eventually want it.

For example, my friend, who decided to let her son choose whether he wanted the surgery as he got older, took him in for the evaluation at age 8. He had decided he wanted the implant. But because he had developed so little speech, the Audiologist said he was not a candidate. So what was the ultimate result of waiting until he was old enough to choose? The Audiologist made the choice for him instead of his parents--and he still didn't get to choose for himself. The 8-yr-old boy was crushed.

Furthermore, in addressing the question of whether we are "accepting Brynn for who she is," as if being deaf or hearing somehow defines who a person is, Matt and I must say that we do not believe in any external feature or trait defining a person. We firmly believe that every human being is a child of God and that God alone fully understands Who they are. "For the LORD seeth not as a man seeth; for man looketh on the outward appearance, but the LORD looketh on the heart" (1 Sam 16:7).

We also believe in the resurrection of our bodies. This means that after death, our spirits and bodies will be reunited, never to be separated again (D&C 138:17 and Luke 24:39). These bodies of flesh and bone will not be mortal, as they are now, but immortal--and perfect. Inherent in that perfection comes the ability to see, to touch, to eat, and to hear. If deafess defined Brynn for WHO she is, she would then, therefore, remain deaf in the next life. But I do not believe that she will be, nor do I believe a person can be defined by such a narrow thing.

So, in order to preserve her freedom to choose, which we hold as one of the most eternally sacred rights and privileges; and in order to teach Brynn that her spirit is the only thing that will ultimately define her; Matt and I have chosen to give Brynn the cochlear implant. That way, Brynn has the greatest chance of being able to hear, speak, and communicate. BUT, we also plan to teach her ASL, surround her by good Deaf role-models, and open up that world to her as well. In this way, by giving her access to both hearing and Deaf cultures, and putting her in a position where she has the skills to choose either (or some of both), we are ultimately giving her more choices, more opportunities, and more freedom than we could ever otherwise give. Furthermore, we believe this approach will minimize the feeling of isolation--which is the core difficulty.

With the flood of different advice that has come our way since we found out Brynn is deaf, we could not and did not approach this decision lightly. It was a difficult decision to say the least. But I believe the basis for our decision is the most balanced approach we can take.

That said, it still may be impossible for her to receive the implant. We have some tests to run first: to make sure her diagnosis is correct, that she actually has and auditory nerve, and that the cochlear implant has a good chance of working in her individual case. Then, as required by the insurance company, we will also have to do a short trial run with hearing aids to ensure that she is, indeed, profoundly deaf.

But since most of those tests have predictable results given the tests we've run already, Brynn should be as good a candidate as any. If all goes as planned, she should have the surgery sometime before the end of the year.

After that, only time will tell. With Brynn's diagnosis of auditory neuropathy, the cochlear implant really only has a 50% chance of helping her to hear. We feel encouraged, however, that another child in Brynn's almost identical situation (born 24 weeks, cared for in OP NICU, had the same diagnosis, and used the same surgeon and audiologist that we will use) is currently doing very well.

To all our Deaf friends:
We love you and hope you can accept our decision regardless of whether you agree with it. If you cannot accept our decision, we still love you.

To Brynn: We love you and we hope you will always be happy with the many, many difficult decisions we have had to make on your behalf. We are doing our best to increase your array of choices that you might feel free to become the best you.


Much Love,
Mom & Dad