Monday, June 14, 2010
YOU...are the Surgeon, BUT I am the Mother
There before me...a panel of seven cochlear implant surgeons from France, England, Germany and Italy, Gwen Carr, PhD and Dr. Giorgio Lilli from Italy, as well. The panel was led by Dr. Gerry O'Donoghue also known as the Godfather. I sat next to the Empress during the discussion. I have to say the discussion was extremely interesting, especially the opportunity to hear what surgeons internationally had to say. I asked a couple of questions.
My first question was "Parents must go through the amplification process using hearing aids before surgeons will consider proposing a cochlear implant. This period is extremely brief and while I was once told that conventional hearing aids are the way to go for profound hearing loss, surgeons are now advising parents to buy more expensive digital hearing aids for that brief period of time. Given the fact that if a child has a profound bilateral sensorineural hearing loss and will most likely be, in fact, a candidate for a ci, is it really worth the extra thousands for the digital hearing aids as opposed to conventional ones?"
Every single surgeon responded yes.
I was surprised, but at least I now have my answer.
To the question posed by the moderator, "Are bilateral implants more effective than one implant?"
An Italian surgeon responded, "Actually it was God who decided that one."
At a certain point a slide was shown (I had a picture, but my camera got wiped out and lost it)that indicated, based on a study that I can't name- it was in the camera, children receive results ranging from 10 to 90% improvement as a result of the ci.
Obviously, this is a very broad level of achievement. The question was asked, "Do you tell parents this range of possible achievement when the parent is considering the ci?"
All of the surgeons said, "No!"
Parent members of the audience screamed, "YES! Parents have a right to know this information when evaluating the ci."
The surgeons then clarified. First of all they disagreed with the data. Then they said that they would not have shown the study to the parents, rather they would have explained the importance of keeping the processor on at all times, auditory-verbal therapy and parental involvement in the process.
After years as a CI Circle member, I see that the study has a foundation. There are children who are enormous "success" stories, and there are also children who struggle. The factors mentioned above are critical.
My second question was this: "I read a study discussing how a child must not be kept under the effect of anesthesia for too long, that this may provoke learning disabilities in the future. Does this affect your viewpoint regarding sequential vs. simultaneous implantation?"
One Italian surgeon responded: "I only do sequential implantation for this reason."
Another Italian surgeon replied, "I only do simultaneous implantation and I perform both surgeries in 2 hours time."
It was agreed that ci surgery should take no more time than 3 and a half hours. (I did not know this)
Then, a question was asked directly to me- "How has your experience been as a parent interacting with medical professionals?" LOL, perfect question. I responded that I was in no way forced into a cochlear implant, that I had to actually, insist. I find that other parents in Italy, live the same situation- they are told that their child is a candidate and then it is completely their decision to make based on the research and information provided.
No surgeon on the panel encouraged sign language.
Gwen Carr insisted that sign language be used as a bridge during communication gaps.
Regarding parental choice in communication methodologies, Pauline Walker, Deputy Director of Families, NDCS closed with an excellent comment reinforcing that parental choice, the need to inform parents and consider parents as members of the team was fundamental. She drew a line between the surgeons and the families that Gwen Carr then clarified by saying, "If you'd like, I can discuss procedures in cochlear implant surgery."
The point being: Each element of the team involved in taking our children from Newborn Hearing Screening to Cochlear Implantation has a specific role that must not infringe on the ultimate power of a family to make educated decisions for their children.
Not to worry...we, the parents were present.