One Family’s Journey:  When the Medical System Fails a Child

By Horton Barrett, KY Hands & Voices

My husband and I would like to share the story of how our son, Kaelan, was diagnosed as profoundly deaf.

If we had only known then what we know now…I’m sure many of you have shared this same sentiment while trying to figure out how to best provide for your children. I had a perfectly normal pregnancy and loved every minute of it! I had an exceptionally easy childbirth that was 100% natural. Two days later, the doctors came into my hospital room to inform us that our son Kaelan had failed his newborn hearing screen. We were instructed to return to the hospital within the week to have him retested. The second time around, Kaelan failed the hearing screen again, but this time it was the other ear that failed. Confused by the inconsistency of the hearing screen, and aware that the hospital staff said the screening equipment often malfunctioned, we headed to our pediatrician to follow up on these results.

At the pediatrician’s office, the doctor stood behind Kaelan and clapped his hands very loudly. Kaelan turned his head and the doctor told me that he was hearing fine, and not to worry anymore about it until we got to the age of speaking. When Kaelan turned a year old, he began to babble like most toddlers do, but that is as far as it went. I kept expressing my concerns to our pediatrician who told us to wait a bit longer and really look into it when he reached closer to age two.

When Kaelan turned two, I enrolled him in a daycare program. The great staff there expressed their concern with Kaelan’s hearing, reinforcing my suspicions. On our next trip to the pediatrician, the doctor made no examination of Kaelan in any capacity. He didn’t even so much as examine his ears to see if he might need ear tubes or have ear wax build-up. He simply referred us to speech therapy and charged me $85. Now, I may not be a doctor, but I do have extensive training in the medical field and I know that speech therapy is not going to benefit a child until we discover the cause for his delay. I immediately contacted the Commission for Children with Special Health Care Needs and scheduled an appointment with their audiologist and ENT.

I thought this was where we were going to get help. I thought, “This organization cares about these children and will help us.” I was never so wrong.

I would like to say that the majority of the staff at the Commission office was very helpful, supportive and understanding. I cannot say the same for the ENT or the audiologist we were seeing. First, the ENT suggested we have ear tubes inserted because they detected negative pressure in the right ear. In December 2005, we had ear tubes inserted and he also performed an ABR to help us gauge what types of sound Kaelan was detecting, if any. Immediately after the surgery, this doctor sat my husband and me down for the talk.  The first thing out of his mouth was “Kaelan did not have fluid in his ears, but we put the tubes in anyway, just in case.” And they charged me $3000 for this unnecessary procedure. He then went over the results of the ABR, which told us that Kaelan could detect only low-pitched sounds between 80 and 85 decibels in his left ear and was detecting no sound whatsoever in his right ear. Devastated, we went home to sort things out.

A week later, we were in the ENT’s office for a checkup on his tubes. As we waited in the examination room, I was anticipating the next step for us. Hearing aids, sign language classes…I didn’t even know all the options then. I was truly excited to learn what to do next. I was completely devastated when the ENT entered, took a look at Kaelan’s ear tubes, announced that everything looked great and that he would see us again in three months. It took me a minute before I could find my tongue. I finally said, “Wait a minute – you told us just five days ago that Kaelan is profoundly deaf. Shouldn’t we be seeing you before three months?” His response was, “Oh, yes, let me go get the notes from his surgery.” Five days prior, he watched my husband and I cry over the ABR results. He spent 45 minutes talking with us about cochlear implants, which he felt were going to be Kaelan’s only option. How in the world could he forget his diagnosis? At the very least shouldn’t he have written this information in his chart, or even consulted the chart before joining us in the exam room?

Over the next six months, Kaelan battled ear infection after ear infection due to the presence of these tubes in his ears. I was so furious over this. Kaelan had never had an ear infection until these tubes were inserted and our insurance would not cover any portion of the cost of the five milliliters of eardrops that the doctor prescribed us to battle these infections. Those five milliliters cost me $60 every time. So far, I feel I have been robbed of $3265 in funds I can count because of doctor’s visits and procedures that could have been avoided with a little personal care and attention from the doctors.

In the meantime, the ENT at the Commission office referred us to a private organization that specializes in hearing and speech. We went for a consultation and were told that the ENT would inform us when our next appointment would be. Every month, Kaelan and I would go to see this doctor and every month I would ask him if we should be revisiting this organization again soon. Every time he would tell me, “Not yet,” and that he would let me know.

In June, Kaelan had a monthly checkup with this ENT. He asked me if we had been back to visit the hearing and speech center yet. My reply was no, we had not because he had told me to wait until he suggested we go back. His response to that was a very degrading, “Well, you should have been back there months ago!” I was irate! I could not believe that this doctor would look me in the face and say that to me. Needless to say, I was the unhappy parent in the clinic that day. I sat down with this doctor and let him know how unacceptable his bedside manner was. I also let him know that because of him, I was out a lot of unnecessary expenses and that my child was falling behind by the minute because of his unwillingness to act on our behalf.

Kaelan was fitted for hearing aids two weeks after his ear tube surgery. He wore these for 4 months before the hearing and speech center informed us that the ear molds he was wearing were substandard and inadequate. We had new ones made. They still didn’t help. We went through analog, digital and high-powered digital hearing aids and saw little to no benefit from them. We had already been discussing the possibility of a cochlear implant, but we were required to make Kaelan wear hearing aids for 6 months before they would consider it. Eight months later, Kaelan was still wearing hearing aids that did not help him. I finally contacted another parent in the area whose child just recently received a cochlear implant. We scheduled play dates and I learned what this implant and the process of getting one was all about.

We were fortunate to meet this family. While the source of hearing loss was different for my son and his new friend, they had been through a similar experience with the same doctor at the Commission office as we had. They suggested we do what they did and go to an out of state hospital for consultation. We did and that was the very best decision we made in the entire process. These doctors not only cared about our son, but they respected my husband and me as his parents. They were on the ball and immediately started trying to expedite our process because Kaelan was almost three by now. Our previous doctors had delayed the process on all fronts: from the failure to follow up appropriately with the newborn screening to poor choices of hearing aids to lack of intervention. By February 2007, we had chosen the cochlear implant surgery, and Kaelan is progressing well through speech therapy. He is now four year old.

I wanted to share this story because it is very common for parents of deaf/hard of hearing children to be completely lost and uneducated, leaving us at the mercy of those we were taught to trust, namely our doctors. They are supposed to know more about this kind of thing than we are. They are supposed to direct us to the resources we need to provide adequately for our children. In our case, the doctors were either ignorant or entirely too preoccupied with something else to put the required attention and care into their patients.  If it weren’t for the parents that sat down with us and shared their story and experiences, we would not have known what to do next. And, as most of you are aware, there are extreme benefits to early intervention when it comes to hearing and language development in children, and if we had continued to follow the advice of professionals available to us, Kaelan would have been even farther behind. 

Our organization, Hands & Voices, is full of other stories like ours. Just about every family that I have talked to has learned more, found more support, and benefited more all around from networking with other parents. While our situations and cause of hearing loss are all different, and the communication modes that we choose for our children are different, we are bound by the one thing we have in common – we all have children that need us to help them. We are lost, intimidated, scared, sad, frustrated, and sometimes even angry. Doctors are not going to help us sort this stuff out. Doctors are not going to always care or be right. They are limited in their experiences, too. As parents, we have this exceptional opportunity to support one another, share our personal experiences, and encourage each other to explore the options that best fit our own lifestyles and preferences. That is what Hands & Voices is all about: uniting families with similar obstacles to learn from one another and grow together. Thank you to everyone who has shared a story with us. We are all going to stumble and fall during this expedition, but it is our ability to stand back up – and to help our neighbor stand back up -- that will make us all exceptional providers for our children.   ~