To Terminate or Not to Terminate

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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.
    Last edit by Justhere on May 9, '08 : Reason: type-o
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  3. by   oramar
    This is a nice story and I am glad you wrote it. However, I just hope that no one that makes the decision to end life support gets sent on a guilt trip by it. I have known people that kept the life support on just like the people in this story did. They reported to me that they did it out of fear of feeling guilty. They said they ended up feeling worse than they would have if they would have chosen a more natural course. The truth is that there is no easy decision in these cases and it is more than likely you will end up having strong feelings either way. It is OK, that is the way life is at times, difficult.
  4. by   lpnstudentin2010
    by the sound of it "Baby" had a "long" and amazing life.
  5. by   Justhere
    As the story tells, because the doctor did not tell them that he would have immediatley died with in minutes or hours, that is why they choose to continue life support. They felt like they could not have watched him for months struggling for air. But his mother had told me, if he would have said that he would have died that day, they would have taken him off of life support. So sometimes it is what we say to the patients/family that make their decisions for them.
  6. by   prmenrs
    I think they made the right decision FOR THEIR FAMILY in both instances.

    May God bless him and his family (and his nurses).
  7. by   Wildwood Flower
    My husband and I recently had to make that decision and it seems to me that a lot of health care workers encourage families to terminate. Thank God I'm a nurse and had caring nurses working with my son who told us not to give up. This was said after a dr told us "we want our children to outlive us but if that was an animal lying there you'd put it under.Thnkfully we hung in there and he is home doing fine!
  8. by   Justhere
    Pineyrn glad to hear that your son is home doing fine.

    One part that is not in my story, his mother went home one day to take a shower, do some laundry and see to her other children. When she got back to the hospital that evening, she found her son (the floppy can't move baby) extubated and the doctor told her that "baby" had done it. After the doctor left the nurses told her that "no" in fact the doctor had done it. Needless to say they got a new doctor. I guess he was hoping that "baby" would pass away while she was gone.
  9. by   lpnstudentin2010
    That was a horrible thing for the doctor to do. He had no right to do that. Glad they got a new doctor
  10. by   interleukin
    "After the doctor left the nurses told her that "no" in fact the doctor had done it. Needless to say they got a new doctor. I guess he was hoping that "baby" would pass away while she was gone."

    You're kidding, right? Is that really what happened--no details omitted?

    Essentially, as I'm sure most of you have concluded, that doc attempted--but failed--to murder that baby.

    Was he not taken to task for this or did no nurse see him extubate?
  11. by   Justhere
    How his mother told it, one of the nurses saw the doctor do it and told her that the doctor had removed it.
    The same doctor still works at that hospital, so nothing was ever done about it that I knew of.
    I have talked to nurses that have worked at that hospital and say he is pretty arrogant (SP?) and doesn't like being told what to do. I guess he didn't like it when they refused to let him be extubated and allowed to die.
    The next pulmonologist that had him was wonderful with him and always did what he thought would help him have a more enjoyable life.
    Last edit by Justhere on May 8, '08
  12. by   interleukin
    Without question, that doctor should have been reported to the hospital's medical director and CEO.
  13. by   Justhere
    I agree, he should have been reported. I don't know if maybe the language barrier prevented them from reporting him(they were hispanic, at the time mom spoke no english, dad spoke enough to understand somethings, and they had to have an interperter(sp?) for what they didn't understand)