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Posted: May 01, 2008 07:53 PM
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Sometime in your life time you may have to make a decision to terminate or continue life support for a family member. For one reason or another you may decide to continue with life support or you may have to decide to terminate it. This is usually a very difficult and heartbreaking decision for everyone to experience and decided.
This is the story of “Baby”, the nickname his family gave him so affectionately. He was born in the month of September, 1995. He was born with Myotubular Myopathy; he was very “floppy” and had difficulty breathing on his own. He was immediately shipped to the local Children’s Hospital and admitted to the NICU.
It took the doctor’s months to figure out that he had Myotubular Myopathy. When they told his parents the grim prognosis, they painted an ugly picture of his future, one of hospitals, ventilators, feeding tubes, zero communication, no movement and a very short lifespan of one year. The doctors suggested that he should be taken off the ventilators and allowed to die.
His mother asked “How long will he live off the ventilator?”
The reply was “Minutes, hours, days, weeks, months, or even longer, there is no guarantees on how long he will live.”
After hearing this, his parents knew what they would have to do, his parents told the doctors, “If God wants him, he’ll take him on or off the ventilator, until then he stays on it.”
Baby stayed in the NICU until he was almost a year old. Their son now had a trach which was attached to a ventilator, and a Mic-key button to feed him by. They had to learn to care for their son, how to feed him via the Mic-key button, and all his medical equipment that would help sustain his life. They also now had nurses coming in and out of their home 20 hrs a day to help take care of him.
Baby continued to grow and he made it past his first birthday. He was in and out of the hospital two to three times a year with respiratory infections. But he still continued to grow and amaze the doctors that had no hope for him past the age of one. I came into his life at the age of 3. At this time he only had a few words in his vocabulary and did a lot of pointing to get his point across.
At age 6 he enter kindergarten already knowing his ABC’s and could count to the number 10. OH! Also he was bilingual since his parents spoke to him Spanish and his nurses spoke to him in English. So he now had a very broad vocabulary. He was able to sit up, breath on his own for a few hours at a time and play video games.
He amazed his teachers through out his school years, who didn’t know what to expect of this child that came into their classrooms, driving an electric wheelchair, hooked up to a ventilator, with a nurse in tow. The kids at school fell in love with this little boy in the wheelchair, with the long brown eyelashes. He even had a girlfriend, anytime she went to the store and found something with Sponge Bob on it she begged her mother to buy it for him.
At age 8 he received a “Make-A-Wish”, where we thought we (his parent and I) had him talked into asking for a computer for his room. The day the “Make-A-Wish” team came to ask him for his wish, which he had to say out of his own mouth, I was absent with my own child in the hospital. Baby and his mother made a visit to the hospital and that is when she announced “We are going to Disney World.” No matter what we had thought, he let his own wish be known and we went to Disney World. It was a magical week, where he got to be a kid and have a real vacation.
In August 2006, Baby went into the hospital with a bad infection of the Kidneys. I received a call from his mother that morning. He had already crashed twice and was brought back. When I arrived at the hospital he was in a semi conscious state in the PICU. I visited with him and his mother for an hour, I wanted to stay longer but only two people could be in the room at a time and I didn’t want to take too much time away from his father. His mother talked about not wanting to see her son suffering any longer but she did not want him to go either. This family was faced with the decision to terminate or not to terminate life support again. They decided to continue with life support but if he coded again they would let him go. That night I got the call, Baby’s life had ended at 10 years, 11 months and 18 days.
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