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Jake was born with many congenital anomalies. Microtia, atresia, heart disease, polycystic kidney, enlarged kidney, undescended testes, iris coloboma, severe hearing loss are all on that list and part of the long story of health issues. “Undiagnosed syndrome”. This is a term that we have come to know very well by genetics teams across several states. In a nutshell it means that there isn’t a doctor or team of doctors that will place a label or a diagnosis on exactly what caused his issues.
The medical issues snowballed early and Jake spent a long time in the neonatal intensive care unit at Saint Peter’s hospital. There were many hospital stays close calls, and surgeries early on in Jake’s life. He’s had to endure more at the age of seven than most kids will need to endure in their entire lives. We are blessed to be able to say that the heart issues and kidney issues are resolved. We have had too many close calls with infection to count before Jake’s current ENT specialist at the University of Virginia removed a large infectious mass from his inner ear and saved his life. During this surgery his partial ear canal was also removed which in turn sealed off Jake’s head, giving him a chance to continue his life without repeated inner ear disturbance to serious life threatening infection. The operation was a huge success. His doctor was able to remove the mass, leaving Jake’s inner hearing bones and facial nerve intact. Jake has been inner infection free since then.
Since that last close call we have put all genetics, specialists, reconstructive surgeries and anything else not immediately medically necessary on hold at Jake’s request. When you have a four year old tell you that he “doesn’t want to be a patient anymore. I just want to be a little boy” you learn to listen to that very profound little voice, and we do.
Since that lifesaving surgery, Jake has been thriving or so we thought. Jake had been suffering and living with migraines every day from 3 months of age through 6 years old. The specialized headband that was made to hold Jakes hearing aids against his head was the cause. The only solution was to get rid of the band which would mean Jake could no longer have his hearing aids unless he underwent a surgery to permanently implant titanium bolts called abutments into his skull. These implants would allow the hearing aids to snap onto to his head. This surgery would do two wonderful things. It would give him the ability to hear even better than he had before with direct bone conduction to his skull without any interference and eliminate the band that has caused him so much pain his entire life unbeknownst to us. After explaining the benefits to our six year old son he was very excited to have the surgery but very afraid of the hospital still. Jake’s surgery was completed in June of 2013 without complications or infection.
He is thriving and doing wonderfully. He loves to eat and is a growing healthy fit and happy “big kid” who loves to sing and play piano, keyboard, swim, ride his bike, engage you in endless conversation beyond his years, and be with family and friends.
Because of the abutments, Jake is very susceptible to infection so we keep a very close eye on his health and remain aggressive with treating even the slightest cold, cut or cough. He hears even better with his new hearing aids and has responded in audiology exams to sounds as soft as zero decibels. (Equivalent to a straw dropping on a counter top) Jake also at 7 years old has repetitive phrase recognition at the level of a 14 year old. He loves to explain how his hearing aids work, how they attach to his head. Jake has received teaching from a Teacher of the deaf since the age of 6 months old. This with the constant reinforcing of speech and pronunciation has given him the remarkable ability to have perfect speech in spite of having severe hearing loss. He has been equipped and conditioned to self-advocate have the ability to answer questions from young friends as well as adults. He knows no boundaries and overcomes objectives unbounded. We are blessed to be his parents, his family.
In the near future Jake will undergo reconstructive surgery that will make him a “big ear”. Until recently Jake has asked to keep his “little ear” untouched telling us that he wanted to stay just the way he is. When he is ready, we will again schedule his surgery with Dr. Lewin in California. At that time Jake will go back on the surgery waiting list and we will travel to California and Jake will come home with a new big ear to match his other big ear. Until then, we will focus every day on staying healthy and loving life.