I had a lot of wonderful and challenging experiences while I was in audiology school. However, one experience stands out as being the most influential on how I behave now as a pediatric audiologist, and why family- and person-centered care matters so much to me.
I was just starting my second year of audiology school, which, for my program, meant that I was just entering the realm of pediatric audiology and learning the theory and clinical skills behind working with children. I was excited: working in pediatrics had always been my goal. Thus, it was with great anticipation that I took on my first pediatric case. It was an infant who had referred on her newborn hearing screen and had come to clinic for a diagnostic evaluation to determine if the infant had elevated hearing levels that would need intervention.
In preparing for this case, I understood that this infant’s older sibling had sensorineural (permanent) hearing loss in both ears and used hearing aids. This finding provided a sense of relief as I went into the appointment. Counseling with the family will be easy, I thought. At least they already have a deaf child. It won’t be as hard for them if this baby also shows elevated hearing levels.
I was very wrong.
The diagnostic exam was completed. This beautiful infant showed mild, bilateral sensorineural hearing loss. Comforted by my assumption that the mom would not be as upset, I shared results. To my surprise, the mother looked terribly shocked and upset. My clinical professor, Dr. Preston, stepped in to talk with mother more. The mother was sobbing as she exclaimed, “I can’t do this again!”.
I felt ashamed of my assumption, and even though it was never verbally expressed, I wanted to take it back. I wanted to never have thought it. My heart broke for the mother, who was obviously devastated, and I was glad for Dr. Preston, who finished the rest of the appointment, taking the time to listen to and comfort the mother. I committed to myself that day that I would never assume how a family would receive news of their child’s hearing loss every again, and I’m very grateful for that lesson.
The emotional toll of learning one’s child is different in some way can be as extreme as contemplating suicidal thoughts and as minimal as momentary surprise followed by immediate acceptance. The grief that can come when you learn your newborn child has an unanticipated diagnosis is something I have been able to relate to well. My own son, while not Deaf, has Cystic Fibrosis – a genetic condition that affects how my son is able to breathe. I got the news second-hand (from my wife) that he showed the genetic mutations on his own newborn screen, and I didn’t make it 10 minutes without cursing everyone in my way as I tried to make it home. I was screaming myself horse as I drove on the freeway. I was devastated. For months, it seemed I was affected by this new disconnect happened between me and my newborn son. I looked at him and would feeling a fleeting moment of love and attachment before that jarring thought “My son might die” would intervene, and I had such a hard time connecting and doting on my son as I should have. Now, five years later, I still experience deep amounts of grief, but I have been able to develop a deep and loving relationship with him.
In my time working with The Care Project (an organization that provides family support to parents of children who are Deaf or hard-of-hearing), I have heard parents of teenagers still break down in grief as they share their stories, as if the feelings were new and raw. I have also heard parents of Deaf infants praise God and show enthusiasm for their child’s hearing differences. Each feeling a parent has when they learn of their child’s hearing loss is valid, whether it be a feeling of grief, or a feeling of joy. Ignoring parents’ deep-set feelings can cause distrust between the families and the audiologist. It is important that parents can express themselves. As a pediatric audiologist, I have learned that it’s okay to stop talking. It’s okay to sit in silence, even for minutes at a time.
If families are experiencing strong feelings of grief and are wanting to know where to turn, please don’t hesitate to reach out to our doctors! We are here to support and know of plenty of people who want to support as well. Below are a couple of links to resources that may be helpful.
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