Taking a Back Seat

Our son Scott was born unexpectedly at 24 weeks gestation one rainy night in early 2004.  He was just over one pound and we were told immediately to expect the worst.  The first few days were critical for survival, but Scott had what it took to fight.  In his first few months he battled a life threatening blood infection, a massive chemical burn caused by a skin sterilizing agent, jaundice, bleeding in his brain requiring surgery, heart surgery, and constant breathing difficulty.  Any of these alone can be overwhelming for first time parents, but all at once, it is indescribable.

As Scott grew stronger, and started breathing on his own, we were beginning to face long term issues.  We were told that it was almost certain Scott would not walk, due to damage caused by brain bleeds.  Preemies like Scott almost always have eye problems, and he was no different.  Scott had a 50% chance of losing his vision in each eye.  He also had an early hearing test that had inconclusive results, but indicated that he may have hearing issues.

With everything we were faced with at the time, the possibility of hearing loss seemed like something we could deal with, so it wasn’t our primary concern.  Vision loss scared us a great deal, and we were still trying to get Scott off his respirator.  This meant that the hearing issues, which were now confirmed, would have to take a back seat.

Five years later, with over 30 surgical procedures under his little belt, Scott is a happy little boy. His heart, brain, and lung issues have all cleared up.  The doctors were partially right about him not walking.  He prefers to run, jump, or climb.  He lost the vision in one eye, and is very near-sighted in the other.  Despite having very poor vision, he has learned to adapt well, and uses the vision he has with great efficiency.  He is completely deaf, and uses a cochlear implant to hear. With everything he has been through, his hearing, the issue that concerned us the least, is his biggest obstacle.  Scott still has difficultly communicating, but is getting help and is making good progress.

In hindsight, the fact that Scott was facing other medical issues made early intervention for hearing loss even more critical.  While early intervention is extremely important in all cases, an otherwise healthy child with hearing loss has the ability to adapt and integrate, either orally, or with ASL, to a hearing world with relative ease.  A child like Scott, whose vision loss can make it difficult to pick up sign language, and whose constant trips to the operating room can cause a great deal of stress, needs all the help he can get, and early intervention is a good start.

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