February/March 2003--workup for a CI begins. So begins an amazing friendship with Allison Biever…pediatric audiologist at RMCIC!! Without a doubt one of the most inspiring people I have met in my lifetime. She is so incredibly devoted to her job and to the children she cares for!! She makes us feel like Sarah is her greatest priority. Our first meeting lasts 3 hours as she calmly answers all our questions and helps us understand what lies ahead for Sarah if she is to be implanted.
Hearing booth test at RMCIC- Yet another booth test resulting in with Sarah failing miserably...turning only at sound so loud the room vibrated…..> 90 dbl. But I am no longer sad as this makes her an excellent candidate for a CI. I am focused now...I know deep down inside that a CI is meant for Sarah and that she will thrive with one.
Still no hearing moments…. Sarah starts recognizing signs and responding to them...."milk" "bottle" and of course the favorite "cookie". When I sign cookie she claps her hands and her eyes light up!! There are many happy moments but some sad. I felt like I am in limbo…waiting for the cure. Why can't the FDA approve implantation before 12 months of age?? Surgically there is no difference in risk btw/ 9 months of age and 12 months of age...though I am sure there are those who would refute this. They are already implanting meningitic children who obviously are on a time constraint. Why not Sarah??? Studies show that results of children implanted at 12 months and at 18 months aren't different. But what about those implanted at 9 months of age??? Would they have a greater head start?? We want to find out.
March 13th-- Our first meeting with Dr. Kelsall, A wonderful person…..kind and informative and a fount of knowledge. He gives us no promises. He is very objective. He tells us that he has already implanted 5 children with AN. Sarah would be the youngest. All are doing "well". Well?? What does that mean?? I guess one has to understand that children with hearing impairments often have accompanying disabilities. Physical…Mental… disabilities that can hinder learning to work with a CI. Each child is different...each result is unique to that child. We will have to implant Sarah without knowing the result. Gosh…what a burden to have on one's shoulders.
Surgery date set for May 12th Sarah will be 9 months old. Dr. Kelsall is willing to perform the surgery but we have to see if our insurance will approve it. Paperwork sent in and now waiting.... Insurance called and informed us that they will consider allowing the surgery as long as the diagnosing MD will also approve it. Well...after speaking with Jennifer (Sarah's diagnosing audiologist) via phone I soon learn that an approval is not going to happen. Both she and Dr. Cass feel that children with AN should wait till at least 18 months of age before deciding upon an implant due to the belief that delayed maturation of the auditory nerve can begin to be observed between now and 18 months. (Statistically this is <1% in a healthy full term newborn).
Personally, I believe that AN children are unique. Some hear very well…some require HA's....some don't hear at all...some have other deficits.. All this needs to be taken into consideration when deciding upon an implant. You need to take the child as a whole... Sarah was born full term…has no other deficits...has no hearing moments...is a perfect candidate.
But Dr. Cass refuses to hear me out. In fact he gets quite angry with me on the phone and says that we are not acting in the best interest of our daughter!!! That there is not enough data to suggest that children with AN will benefit with an implant. That attempting a CI for Sarah is "illegal" because it is against the FDA recommendations. (Well, most of us know that it wouldn't be illegal. Physicians go contrary to FDA guidelines everyday). Well...that phone call didn't go over well.
So...we take our chances with the second diagnosing surgeon, Dr. Chan at Denver Children's Hospital, a nice guy with an excellent reputation as a surgeon. Dr. Debra Hayes and Jennifer Ivinson who I am still in contact with show up for the meeting to lend their support. I am forever grateful for this. Sarah is no longer a patient of theirs but still they are present for the meeting….their support speaks volumes to us. Dr. Chan understands our desire to implant our daughter earlier than FDA allowance. He is well aware of Sarah's medical background…or lack thereof. He even takes the time to call up Dr. Jon Shallop with whom he has worked in the past....knowing that his group has performed more surgeries on children with AN. He does question why we won’t wait 3 extra months??? He states that there is no research to show that implanting at less than 12 months of age will provide more of a benefit than at 12 or 18 months. True, there is a paucity of data for children < 12 months of age yet personal communication with Dr. Jon Shallop leaves us feeling that implantation before 12 months is showing promising results.
Well…at the end of the meeting Dr. Chan writes a letter stating that there isn’t enough evidence to support implanting a healthy child under 12 months of age and that "the available data on children with AN in terms of the efficacy of cochlear implantation, has only limited data to suggest benefits".
In addition to the above we also received letters of support from Dr. Charles Berlin, Dr. Debra Hayes…Dr. Matthew Dorighi (Sarah's PCP) and Lynn Wisemann- Horther (Sarah's AV therapist). Well…we tried. We tried our best...what more could we do. We wait.......what more could we do? In the end our insurance denied the request for a May date. We would have to wait till august when Sarah turned 12 months.
Choosing an implant: It is somewhat of a hard decision for us…Med-El or Nucleus. We have spoken with parents of children who had one or the other and no one has had any complaints. We like the fact that the med-el processor is smaller and lighter than the nucleus which is the bulky BWP. However the med-el implant itself is thicker than the nucleus which means more bone being drilled and that isn’t so favorable to us. I think in the end either one will have served our daughter well but we choose the nucleus.