A Lesson Learned From a Preemie

Kaitlyn then and now

This week, my daughter, Kaitlyn, will graduate from high school. As I look at this vibrant 18 year-old young woman, I find myself thinking back to her birth. She was born at just 26 weeks gestation, weighing only 1 lb., 12 oz. A few days later, her weight dropped to 1 lb., 6 oz. The neonatologists were cautious; they spoke in hushed tones and could only muster a guarded prognosis. We didn’t know if she would survive.

Just before delivery, while my wife, Maria, was in preterm labor, we had a parade of physicians and residents who visited her hospital room to check her status. The hospital was affiliated with a medical school, so we became accustomed to a regular flow of medical students who were more than a bit curious about the possibility of delivering an infant so early. Each time two of them came into the hospital room to check on my wife (they seemed to travel in pairs), they would do a quick exam and then reach into their coat pockets to get the “card.” This seemingly magical card contained a set of statistics that detailed the survival rates of infants born at various birth weights and gestational ages. Each physician would then proceed to recite these statistics, which sounded something like this:

“Mrs. Houston, you’re at 26 weeks gestation, and according to our research, infants delivered at this gestational age have a 20% chance of survival. If you deliver at 27 weeks gestation, the survival rate improves slightly to 26.8%. Of course, if you deliver later, the percentage of children who survive continues to increase.”

Like clockwork, each physician and/or medical student would reach for his or her card after every visit to the room. The story was basically the same except for a few additional potential “complications” for a child born at each gestational age – such as blindness, deafness, cerebral palsy, brain bleeds, and a variety of other medical conditions. After witnessing a few of these episodes, my wife and I could recite the statistics from memory!

At the time, repeatedly hearing what could happen to our daughter was difficult to absorb. The information could have been delivered in a more patient-friendly – and parent-friendly – manner. The statistics that were shared were grim, but knowing what could happen helped us to prepare. Those two days in the hospital trying to prevent and then waiting for Kaitlyn’s delivery allowed us to understand the worst possible scenario but, at the same time, hope and pray for the best outcome.

As I reflect on that experience, the statistics that the physicians cited were quite impressive. In fact, I’m a bit envious that we can’t say something similar for children born with hearing loss, which is the population that I work with most frequently. That is, I wish we had the ability to confidently state that: “…an infant identified at birth with a severe to profound bilateral sensorineural hearing loss and fitted with XYZ hearing aids and immediately enrolled in early intervention will have a 96% success rate in developing intelligible spoken language by the time s/he is five years old” or “an infant who fails to develop adequate listening, speech and language outcomes with hearing aids and then gets cochlear implants by one year of age will achieve age-appropriate developmental outcomes within 18 months if the parents are fully engaged in the intervention process and when services are delivered by a qualified provider.”
To accomplish something like this would require enormous resources and standard protocols for professionals across many disciplines, including but not limited to: Pediatric Medicine, Audiology, Speech-Language Pathology, Deaf Education, Special Education, and Early Childhood Education.

The myriad factors one would have to control to obtain similar outcome data for children with hearing loss truly boggles the mind. Some of those factors would include: cause of hearing loss, degree of hearing loss, age of diagnosis, type of hearing technology used, communication approach, type and frequency of early intervention, level of parent engagement in the intervention process, the skills of the service provider, the family’s socio-economic status, and additional medical conditions or disabilities beyond deafness –and that would be just to capture the most basic information.

Parents today who have a child with hearing loss deal with too many challenges to ensure their child is successful. Too often, they face obstacles securing appropriate audiological services and early intervention that supports their preferred mode of communication. Furthermore, the variability in services from community to community is alarming, and if the family lives in a rural area, there’s an even greater chance the child will be grossly underserved or not receive services at all.

Kaitlyn, my 1 lb., 12 oz. baby girl, is leaving high school and will be entering college this summer studying pediatric nursing. Aside from spinal surgery for scoliosis about six years ago, she is a rather typical teenager making the transition into adulthood. We owe her success to treatment and intervention that was well-defined, consistent, and delivered by practitioners who were highly-trained. Someday, I hope all parents who find themselves dealing with a premature infant or some other medical condition at birth – such as hearing loss – can receive the same level of support from the professionals surrounding them.

(Note: This blog was adapted from an original posting by the author on the Better Hearing Institute’s Pediatrics Blog.)

 

K. Todd Houston, Ph.D., CCC-SLP, LSLS Cert. AVT, is an Associate Professor in the School of Speech-Language Pathology and Audiology at The University of Akron. His primary areas of research include spoken language acquisition in children with hearing loss, strategies for enhancing parent engagement in the intervention process, Auditory-Verbal Therapy, and telepractice. He directs the Telepractice and eLearning Laboratory (TeLL), an initiative to evaluate clinical practices in the area of distance service delivery in Speech-Language Pathology.