On June 22, 2011, Malachi’s first birthday, Malachi was diagnosed with bilateral profound deafness. Eventually we found out that he hears nothing up to 110 decibels in his right ear and hears a little at 100-110 decibels in his left ear. As of today we still do not know the cause. MRIs show his ears as normal and we are waiting for genetic testing to come back. There were never any viruses that we know of that would have caused him to loose his hearing. After much thought and prayer we have decided to give Malachi Cochlear Implants (CIs). We know there are mixed feelings among our friends and family and we are writing this to explain our reasoning so that we don’t have to repeat it hundreds of times. :)
First, Malachi is a good candidate for CIs. Malachi will never learn to speak without cochlear implants. Even with hearing aids he can barely hear a loud cowbell in his left ear. This type of hearing is not functional for speech. Malachi is also still under the age of 2 which is prime time for the implants to be fully effective and for him to receive the most benefit. The ENT called his cochlear nerves “robust”, meaning they are healthy and large. Malachi doesn’t have any other learning disabilities and is proving to be a great problem solver so there are no concerns that he won’t be able to figure out the CIs once in place.
We believe in giving our children every opportunity to be and do whatever they want. Some view implantation as taking away the child’s right to choose. However, if we waited until he was “old enough to decide for himself” he would be too old for the CIs to be of any benefit to him. We feel that by not implanting him, we would take away his right to learn how to speak. Giving him the CIs now would give him the opportunity to learn speech. If he later in life he decides that he wants to choose a deaf life he could leave off his processors and have both options.
Another reason is that here in
Although Cochlear implant surgery is considered major surgery, children are usually sent home the same day. Just as having your gallbladder removed is major surgery-you usually go home the same day. In this day and age, technology has moved forward where the techniques are more sophisticated and perfected. The incision site is small enough to not be noticeable behind the ear. We will also be doing two separate surgeries as MUSC does not do bilateral surgeries. The implants are continually improving, and there is no reason they shouldn’t last for a long time. Also, our insurance will cover the surgeries and implants, plus there is a program called TEFFRA that helps families with no insurance or insurance that doesn’t cover them that we can qualify for.
We still plan on teaching Malachi ASL. Initially, we won’t introduce more sign language than he knows after his activation(s). It’s important for him to learn to listen to his implants. Slowly but surely we (as a family) will become, at minimum, conversational in ASL. Honestly, even with the implants he will still be deaf. He won’t be able to wear them all the time. He can’t shower, or sweat too much with them on. He won’t sleep with them on. There will be times when the CIs aren’t available and he/we will need to communicate. We never and will never tell him or anyone else that Malachi was “broken” and we “fixed” him. We view the cochlear implants as a tool, not a cure. Just as hearing aids are tools to help people hear better, cochlear implants will help Malachi hear better. Hearing aids don’t work for Malachi. That’s not an option. We hope to give him all the tools to function in both the deaf and hearing world. We want him to do whatever he wants with the least amount of restrictions as possible.
We have been praying fervently to know what the best option is for Malachi and our family. We feel sure that cochlear implants are the best route. We are nervous and anxious because it is a big decision that we can’t take back. But we trust in the Lord and know he has guided us in this decision. We love Malachi so much and know he is extra special, and we are grateful that the Lord allowed him to be in our family. We know this road will be hard and times will be tough, but it is all worth it to see Malachi grow into the young man that our Heavenly Father plans for him to be.
We will continue to update on this blog his progress. If you have questions, please ask! We are so grateful for all your love and support.
4 comments:
Wow, I don't envy your having to make that decision. It sounds tough. I really don't know anything about the controversy of Cochlear Implants but it sounds like you guys have great reasons for doing it. I've heard that with cochlear implants they don't hear the same as we hear, that its more electronic? I'm sure you know more about it, can you explain it a little? I'm just curious as to how it all works. Any case, I think you guys are great and Malachi is so blessed to have you!
Oh I forgot, I had one more question. Where are you learning ASL? I've actually been wanting to learn for a long time so I was just wondering if you have found a great website or videos that help?
Kandra, I have to say: Just while reading this post I could feel the Spirit, in all your words. I am near tears, and it is because I know how strong the Spirit is wrapped around your little family, directing and protecting you and every choice you make. Malachi is an AMAZING little boy. And he has an amazing family to love him.
thanks for explaining that out, i know it's been a hard thing to choose something so important and unchangeable, and i really commend you guys for everything you're doing. i agree with jenni; i felt the spirit while reading what you wrote and know that you guys have been praying and made the right decision for your little family and your malachi. you are so loved!
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