Aaron Joshua Soskil (Dec. 23, 1984 - June 1, 1987)

Aaron Joshua was born a healthy infant on December 23rd, 1984 at Franklin General Hospital in Rockville Center. Upon his initial checkups after we left the hospital, we were told Aaron was healthy and normal. Two weeks went by, we began noticing that Aaron has a little bit of a dusky appearance around his mouth and it seemed that at time he was gasping for air... My wife and I took him to the doctor... but the doctor said that it was possible he had a cold or bronchliotis.

About 3 weeks after Aaron was born, the duskiness became a light blue circle around his mouth... his breathing became deeper as he sucked in air. We brought him to the emergency room in the hospital.

At the hospital upon seeing Aaron's condition, the doctors placed Aaron in a croup tent which was aerated and ventilated, and they put him on heart and breathing monitors. We were assigned to the PICU at Schneider's Children's Hospital, at the LIJ Medical Center in New Hyde Park, Long Island. The doctors could not assess what was causing Aaron's distress, at that time.

Three weeks more went by with no change... and no answers... My wife and I took turns caring for our other children while they weren't in school... and when I had to go to work, she stayed by Aaron's side, all day. Several nights our other children slept with us in the PICU waiting room. Every day and every night my wife and I took turns sitting by Aaron's crib watching this little boy as he sucked in the air. We watched his little chest imploded as he sucked in the air and bloated, as he let it out. We had several appointments with ENT Specialists. Finally, Aaron was scheduled for a flexible bronchoscopy.

It was 7:00 in the morning when the procedure began and it was 7:25 when my wife and I were told that Aaron had stopped breathing while on the table. We were hysterical that this occurred. We lost our child....How could this happen? At 7:40 the doctor came in to console us and told us that they were able to revive Aaron and that they were going to complete the procedure. Oh my goodness... what a rush! What an emotional roller coaster.

The prognosis was that Aaron was born with a hemangioma (birthmark) in his tracheal region. This mass was blocking 90% of his passageway. Dr. Alan Abramson, Head of ENT at Schneider's was called in to do lazar surgery. (He developed this procedure and was the only one to ever use it, at that time). Aaron was the youngest human to ever have this procedure. We were blessed that Aaron was alive and doing well. Dr. Abramson was God sent. His bedside manner was wonderful and he and his staff were so supportive and attentive to us and for little Aaron. Two days after the procedure, we were able to take our healthy baby home.

A couple of months went by, Aaron was doing well. He had blonde hair, blue eyes and was a beautiful and happy baby. His growth was normal and he was doing all those things that an infant his age should have been doing until the fourth month that we were home. In the fifth month, Aaron started to look dusky and was showing bluish around his mouth and upper lip, AGAIN. We immediately rushed him to Dr. Abramson, who examined Aaron to find that scar tissue had formed and was blocking his trachea, once again. The only answer at this point was a tracheotomy. My wife and I were horrified... We though it was like the end of the world having to care for a child with a trach. How were we going to care for him?

The operation went well and my wife and I took courses on tracheal care and necessary emergency care. We learned to deal with the situation and so did our other children and good friends that even went to classes to learn about tracheal care (in case my wife and I needed some relief).

Aaron grew like a normal child although, he had to have a ventilator which blue moist air into his trach several hours a day and when he slept. He required constant care and attention to make sure his airway was always clear and we were always attentive to his needs. Aaron laughed through his trach and made noises to let us know he was trying to communicate with us, when he wanted to. He cried tears when he was unhappy and only a cackling sound would come from the opening in his trach. At about the time Aaron turned 18 months old, which is normally when children start to talk, we started to take him to speech therapy classes. In 6 months, he mastered about 200 signs. He was able to tell us, through sign language what he wanted. He was exceptionally bright.

Our family activities were pretty normal. We went on vacations, out to diner, on family excursions and even out on our boat. Aaron loved the wind blowing in his face. On May 30th 1987, I was out on my boat with all three of my children. While Jessica and Michael were swimming in the water, Aaron was pouring open cans of soda on their heads. He was having a blast. (Aaron was not allowed in the water because water would get into his trach and block his air passage). It was a beautiful 90 degree day and we were having a great time.

That evening, all the kids showered and we bathed Aaron, as usual. It was a long but fun day, a day that I will always remember. Everyone went to sleep on time and Aaron was fast asleep with his ventilator on as usual.

"Monday morning, everybody up and let's get ready for school." But as we went into Aaron's room, he lay there stiff as a board. My wife screamed for me and I cam running. Aaron wasn't moving. I picked him up and wrapped him in a blanket and we ran to the car. We raced to the emergency room at the hospital. The nurses and doctors grabbed the baby from us and ran into a room with him. We sat there for about an hour... One of the longest hours of my life, again, until there it came. A doctor and a nurse approached us and told us that there was nothing more that could be done. Aaron had passed away in our home, as we slept. His trach clogged in the middle of the night, nothing we could have done. June 1st 1987, Aaron passed at 8am.

The following morning, I went to Dr. Abramson's office. In my discussion with Dr. A, I decided Aaron was here for a reason and I tried to reason why. Dr. Abramson suggested that I set up a fund of which the money will help to pay for families of children with tracheal disorders, to stay in the Ronald McDonald House. The Ronald McDonald House was just in its' infancy at that time. I did what Dr. A had suggested and I established a Memorial Fund in Aaron's name.

From that time forward, I became more and more aware of the needs of others. I became involved in Variety Children's Charities, American Lung Association of Queen and as time progressed, ChildCare of Nassau, Big Brothers and Big Sister and so on.

I feel I have given Aaron's short existence on this Earth good meaning. Not only has my life been enriched through his name but we have reached out to help others and on this journey. I have been teaching my children to do the same.

Thank you for your interest and joining us on the Aaron Joshua Soskil Memorial "Cruise for Causes".

- Marvin Soskil