The rules on reimbursement for bilateral cochlear implants for children in the United States are not clear. If you are a parent who has been denied coverage for a cochlear implant for your child, under 21 years of age, please let me know. If you have received coverage for bilateral implants I'd like to know that too.
Here's an email Yehushua's parents wrote to me:
Yahushua was born prematurely at 26 weeks and 5 days on 26 March 2009. He was a tiny 1 kg or 2.2 lb., not yet fully developed, beautiful boy. The underlying skepticism of the medical staff’s comments was evident, yet we prayed and kept on praying.
From then on for the next several weeks every moment was a roller coaster ride at the Neonatal ICU.
During Yahushua's first few weeks of life he was given an open heart surgery ( a Linea valve was inserted as the heart valves had not yet closed). An emergency double hernia operation followed some weeks later. Blood transfusions were required due to the many tests that were necessary.
Once more a serious setback was encountered as his body reacted negatively and his red and white blood cells started to attack his own body. This in itself is very rare and they stared to do medical research on this. His weight dropped till just above a block of butter, slightly more than 500grams.
Again we were fighting for his life. The doctors and nurses referred to him as their miracle baby, as even they found it to be miraculous that our son survived. At the end of two months he had shown his own determination to survive yet it was still a long and intensely difficult road to travel for the whole family and all involved.
There is no certainty whether his hearing was affected by this event or during the previous fight for his life as it could have been due to the high doses of antibiotics and medications or the long and high doses of oxygen.
After the hospitalization we had to wait until he was about 9 months old to be able to test his hearing. He had constant ear infections and that had to clear up before tests could be done. Then all the usual tests were done and a decision was made to send him for further tests. The tests resulted in the diagnosis that the cochlea nerves were damaged and the sound impulses and waves could not reach the brain.
At ten months Yahushua received his first basic hearing aids to allow him to hear sound, so that he would not be fearful when he would be exposed to regular sounds. He could only discern some sounds, but no language. These hearing aids were tested regularly to determine his progress, if any.
After this process we opted for the strongest hearing aids available that enables him further in differentiating sound. It is the conclusion of the medical experts that Yahushua has a severe/profound hearing deficiency and an option was presented that he receives cochlear implants. His first implant was sheduled for May 3, 2013 and as of March 22nd this ONE implant has been fully funded by many generous donations, big and small on Facebook. The second cochlear implant still needs to be funded.
After that he was advised have to get his next cochlear implant in the Left ear within the next 3-6 months, we have already passed that window. This would provide him with the opportunity to learn to listen, talk and communicate freely and independently. As he 4 years old we pray that the Father will open the right doors that my son would be able to have a full and responsible life.
The costs of the second cochlear devise alone will be R250 000,($28,000 Canadian) which does not include the additional costs for the hospitalization, scans, operation and doctor’s. The doctor said the amount will add up to about R350 000 – R400 000 ($39,000-$44,500 Canadian). As we cannot afford a medical aid/policy all the cost is our responsibility. Added to the above is the post-operative rehabilitation program e.g. speech therapy and educational support.
As parents we want to know that we have done everything possible to help him, to give him the best chance in life that we possibly could. So we ask that, if you feel able, to please help with the raising of awareness for funding of the cochlear operations. It would mean a great deal to us, but especially to Yahushua.
Thank you and Shalom
Lee Van Schalkwyk (mother)
Morne Van Schalkwyk (Father)