Personal Stories

Paula Baez

Written by: Sonia J. Sierra
(niece of Paula Baez)

As a typical Puerto Rican family, we are taught to live with the traditional ways of our culture passed down from generation to generation. We are taught to take care of our own. Tradition states that we take care of our family members and elders in their times of need. We do not institutionalize our family members, because of the way they look or their medical problems.

This story is written about Paula Baez, known to us as "Paulita". As far back as I can remember, she has always been a part of our lives. She was accepted for who she was. She was special, she had Down's Syndrome. Our grandmother never let us put her in school, she felt that she was responsible for her and had to take care of her till the end. Even though she was "different" to some people, we never saw what other people saw in her. She had lived with us and was always taken care of by the family.

Medically, I do not remember her ever being sick. She had routine colds, but never had been hospitalized for anything. At the time she got sick, she had already turned '49', this would be considered a miracle of life. We were told by her physician, that the life span of a Down Syndrome child would be in the 30's. She out lived her life span, because of the way she was treated and taken care of by her family.

One day she got sick, we took her to her physician. At first, the physician was receptive of us telling him about her symptom. We discussed that she was in pain and also other problems that she had been having recently. The doctor's were confused as to how we would know what Paulita was feeling. Living with her and taking care of her provided us with the knowledge to know how she felt and to what degree the symptoms were affecting her. When she became very ill and had to be hospitalized, it was a traumatic experience for her and the family. She was a person that never had been away from us, she went everywhere with us. She spoke no English, just Spanish. We spent many hours in the hospital making sure that language would not be a barrier.

Her sickness reached the point where the doctors wanted to insert a feeding tube for her to eat, the family disagreed. We felt that we could get her to eat by herself, and not have some tube inserted into her body. We fought all obstacles put in front of us by physicians and nurses. Success followed and she started eating by herself or with assistance when needed. Without prior knowledge, Paulita was discharged from the hospital. We were faced with a dilemma as to how to continue care.

Since, Paulita had never used any special services or equipment growing up when the time came for these services to be put in place we were faced with many obstacles. Services and equipment were continuously denied. We never gave up and fought long and hard to make sure she was provided with everything necessary to make her as comfortable as possible. Persistence paid off and Paulita received her services.

The second time she went into the hospital, she was very sick. She had problems keeping her food down, she got weak and could not stand by herself. We than found out that she had pneumonia. Her condition worsened and we were informed that she might not survive. She did not have a health care proxy and we were not her 'legal' guardians. My mother was her sister, but that still did give her rights to make medical decisions for Paula.

The discussion arose of using a ventilator to help her breathe. The family was extremely upset and expressed that under no circumstance would we want this done. We had had other experiences with family members who had been put on ventilators and had suffered more than was necessary. As it happened, she was put on a ventilator without our consent.

Her physician discussed with us, that he would help us as much as he could, but that the hospital would fight us, because legally we were not guardians. We spoke to our lawyer, who was shocked to hear that we were trying to get legal guardianship on Paula, when he knew that all our life we had taken care of her and our grandmother. He told us that by the time we got in front of a judge, Paula might not be with us. Even though we fought it, they did put her on a ventilator against the families wishes and I am almost positive hers. But because she could not defend herself and we couldn't defend her, her rights were taken from her and us. She eventually died peacefully in the hospital.

I want the world to know Paula's story and how special she was to us.

We feel that no matter what your medical condition is, every human being deserves to be taken care of with dignity and respect. To us her rights were taken from her, because we were not her legal guardians. As her family, we were the one's who took care of her from the time she was born till the day she died.

I found it a shame and a disgrace to fight a system, that should be helping people not harming people. Especially, when I am an individual who works in a VA hospital with HIV+/AIDS veterans that fought for our country, and I am a civilian helping people who cannot help themselves.

I don't ever remember any agency or government offices inquiring on her needs as a human being, but in the end they decided they had the right to make medical decisions. I don't understand where or who gives them the rights to decide on human life. No one knows the patient more than the family. We were the ones touched by Paula and loved her. The decision should have been made by us the family, not an outside agency who knew nothing about her or what kind of life she had led. In the end, the sacrifices this family made meant nothing to a government who only wishes to control what it does not understand.

As a religious family with traditional values, only one person has rights over us and can make decisions for us and that is God, not man.

Written by: Sonia J. Sierra
(niece of Paula Baez)