September 15th, 2012
Yesterday Oceanside clocked 108 degrees. It was a record breaker, but not one we ever really wanted to achieve! Most of us don’t have air conditioners here, because usually we only need them a few days of the year, so you can imagine how miserable we all were. Thankfully a section of our house is air conditioned and we spend our day in those rooms waiting for the heat to pass. Yesterday I received a very unexpected blessing that really brightened my day!
Amelia was here with us. She had just completed her first four day school week and she was enjoying some down-time just playing with her toys. She makes a lot of noise these days when she plays, nothing in any way recognizable, but she seems to like it. We had to go out briefly to go to her physical therapy appointment and she worked hard at climbing stairs and walking on uneven surfaces (which she absolutely hates!). Amelia does not seem to need a nap anymore, but after lunch we sat together in my rocking chair and I was singing songs to her. Now you need to remember that songs or music have never been a part of Amelia’s experience and she only recognizes a few songs from her speech therapy sessions. Since she does not like to sit still, she was participating with her hands and doing “the wheels on the bus” and the “itsy bitsy spider” as I was singing. She got quieter and quieter and suddenly I realized I had actually sung her to sleep for the very first time ever! What a tremendous feeling! Usually when I rock her she has just had her bath and is not wearing her hearing device, so she can’t hear anything, but this time she actually listened and enjoyed it. Wow!
Isn’t it amazing how much we take for granted with our “normal” babies? Singing to them is something we do automatically and without giving it a thought. For Amelia this is brand-new and another aspect of her changed existence. I am so thankful!
Sunday, September 16, 2012
DJ wrote this essay for an on-line class he was taking while we were in Italy. He managed to express a lot of what we were feeling at the time as well as when Amelia was born and I wanted to share it with all of you (with his permission of course).
Hope for Hearing
As my wife and I sit waiting for any news from the doctors an uneasy feeling floods my brain. It has been over four hours since our daughter went in for surgery. Doctors and nurses come and go at a dizzying pace but no one stops to shed light on Amelia’s progress. Maybe it’s the language barrier - this is one of the excuses I am using to reassure myself. Badges are swiped at one door, pin codes punched at another. It’s cold. The operating rooms are in the basement of the hospital and it is snowing outside. She has endured numerous surgeries so far but this one is very different from all of the others. This one was elective not mandatory. This was brain surgery with irreversible consequences if something went wrong. This was our decision.
My wife’s pregnancy seemed pretty typical considering this was our second child. This is easy for me to say because I did not have a child growing inside me; although I did eat for two on several occasions. Since my wife had just turned thirty five she was subjected to a little more prenatal screening than the average mother-to-be. Every test came back normal. She called me at work and within forty five minutes after arriving at the hospital, our second daughter was born.
Disbelief is the only way to describe my emotions. I remember thinking of ads in the newspaper with charity organizations showing images of children in South America with cleft lips; they were tough to look at. This was Amelia. She was born with a cleft lip and palate, eyelid colobomas, large skin tags, and a hole in her heart. She was rushed by ambulance to Children’s Hospital where she would spend another three weeks.
The doctors diagnosed her with facio auriculo vertebral spectrum. This is a broad diagnosis which lumps together multiple disorders into the same conclusion. While it was comforting to hear her abnormalities identified, it meant little to us. Certain images of the future became obscured. Following the birth of our first daughter, at particular moments I could picture myself in my parent’s shoes. I could see my child going to school, getting married and having children. All of these notions came to a screeching halt. Would Amelia ever be normal? Would she ever be able to lead a normal life?
The fifth day in the hospital a specialized ophthalmologist performed surgery on Amelia’s left eyelid. Three months later, she had surgery on her other eyelid and had her cleft lip repaired. At eleven months old surgeons repaired her cleft palate and reconstructed her left eyelid. She had a few other surgeries in between to replace tubes in her ears to relieve fluid accumulation. We had some amazing doctors. Amelia would not have progressed so far without their expertise in their respective fields.
Most newborns receive their newborn screening within the first twenty four hours after birth to determine their ability to hear. Amelia had so many other postpartum complications that she did not receive her hearing test until a few days later. When she failed it, we were not overly concerned. It is not uncommon for newborns to fail the newborn screening test. Then she failed her BAER test. In the months that followed we came to the stark realization that Amelia was deaf.
Deafness is not the end of the world. American Sign Language or ASL has become more common and is being taught in some schools and colleges. My wife took a baby sign language class with our first daughter which really helped her communicate before she could actually speak. Since Amelia was born with special needs, we were enrolled in the early start program and had a sign language instructor come to our house every other week. ASL has played a valuable role in our family by helping us communicate to Amelia and her to us.
While ASL has been a tremendous help we still pondered the possibility of Amelia being able to hear. Currently, many children who are born deaf receive cochlear implants before the age of two. A cochlear implant is a device that is implanted under the skin near the ear which stimulates the auditory nerve and produces sound. Researchers and doctors have stressed the importance of implanting children at a very young age to obtain the best results.
A cochlear implant seemed like a viable solution until we learned Amelia was missing her auditory nerves. An MRI of Amelia’s skull confirmed this fact. A cochlear implant would not work. Amelia’s audiologist e-mailed us an article about a procedure called an auditory brainstem implant or ABI. ABI’s are similar to cochlear implants except for the electrode is placed on the brainstem. It is a very complicated and serious surgery. More importantly, it is not approved by the FDA for children less than twelve years of age. After some research we learned of a doctor in Italy, Dr. Colletti, who has successfully implanted children and achieved tremendous results. We sent him Amelia’s medical records and waited for a response.
When we received confirmation from Dr. Colletti that Amelia was indeed a candidate for an ABI and he was willing to perform the procedure we were at a crossroads. Amelia had recently turned two and had progressed beyond our expectations. She had started to walk and was using more sign language every day. Do we risk her future on a procedure that could leave her brain damaged? While the chances are slim, there is a chance that the wrong area of the brainstem could be touched leading to seizures and brain damage.
There was also another factor which weighed heavily in our decision: price. The procedure was about ninety thousand dollars and not covered by insurance. I had been laid off from my job of over fifteen years and returned to school. My wife and I are prideful people but there was only one way to give Amelia the opportunity to hear: ask for help.
While I was reluctant to share our hardships with everyone, I was also very concerned about coming up short on fundraising. What if we only raise a few thousand dollars? What if we raise a tenth of the money? We will have to come up with the balance. There is no turning back once we start receiving donations. We can’t say, “We came up well short of our goal and won’t be able to go ahead with the procedure, but thank you for your contribution.”
Overwhelming is the only way to describe the support we received. My wife’s co-workers held a fundraiser at a park. An acquaintance had a neighbor who hosted a fundraiser at her restaurant. A friend of ours obtained sponsors and ran a half-marathon. My wife’s parents went to church with a family who held an annual walk-a-thon through their non-profit organization. The organization supported families whose children suffered from illnesses and disorders and they generously accepted Amelia as one of their beneficiaries. Five months later we have reached our goal. It is very humbling to have so many people pitch in to help change our daughter’s life.
We finally see a familiar face appear through the secured double doors. Dr. Colletti must have seen the look of consternation on our face and approaches. In perfect English with the obligatory Italian accent he asks, “Has anyone talked to you yet?” When we reply “no” he reveals, “Amelia is okay, they are just finishing up. The implant looks great, great potential!” What a relief.
It has been five weeks since the surgery and here we sit, in fair Verona. The device gets activated on Monday, the day before we leave. It is turned on at extremely low levels at the beginning and is finely tuned over months and years. The decision to proceed with this surgery has been one of the toughest decisions my wife and I have ever made. Before we embarked on this whole journey our five year old daughter asked, “When Amelia turns four, will she be able to hear me call her name?” Let’s hope.
Posted by kristina at 11:16 PM