“Hoy es el dia a hacer consultarios solo por chicos con sindrom de Down,” Dr. T told us when we arrived at clinic. The consults will take place after we sit in on the presentations over difficult cases occurring in the hospital. The fist was a child with a large abdominal tumor that needs to be shrunk with chemo before it can be removed. The second was a very sick boy with a combination of TB and hepatitis who health is rapidly declining. After the presentations were given and the arguments were made we met Dr. T in the sala de consultorios, sala 5.
She is a late 50’s slender light skinned woman from Brazil who likes to ask how to say things in English. She has a face you can trust and respect and is amazing teacher of what it means to be a doctor. The first day I worked with her she sat me down in front of the computer to take notes in as she dictated to me in Spanish. You don’t know how hard it is to understand the word hyperactive spoken quickly and with a Spanish accent. I don’t know how many times she turned to look at the screen only to see Eper accion, and she would turn her head in a confused looked and I would just look blankly back like a puppy that didn’t do anything wrong right after chewing your shoes.
The previous day we had sat down in the cafeteria for a sweet tamale and coca-cola. She taught me one of the most important things I’ve learned this trip. The way you break the news to a patient is the first treatment for any illness. It sets their mind on the positive or the negative, the illness or the treatment, the past or the future. I would see this lesson in action today.
Dr. T called in the first patient and a mother and father entered the room with the child bundled in the mother’s arms. They took a seat and Dr. T greeted them politely and then began to ask them questions about their child.
“How old is he?”
“11 days,” the mother answered looking down at the bundle in her arms.
“What is his name?”
“David,” still looking down at her baby.
“How many children do you have?”
“This is our first,” she said turning and smiling at the father who smiled back.
“Felicidades,” I broke into the conversation.
“Sí, felicidades,” Dr.T repeated with a smile. “And how old are you and your husband.”
“I’m 24 and he’s 29,” she was rocking the baby side to side.
“Ok, and do you notice any problems with your child?”
“No, but we were told he has Down’s syndrome,” she turned her eyes to the doctor.
“Do you know what Down syndrome is?”
The small family of three was calm, a bit anxious to be in the doctor’s office, but calm.
“So we are going to perform a quick exam and then we will talk, ok.”
The mom lifted the light package in her arms onto the exam table and unwrapped the gift that was hiding within. Dr. T and I were gathered around the newborn and the exam began.
“Notice the eyes, slanted, oriental,… the hands, one line strait across the palm, we have two lines,… the feet, same one line, plus fisherman’s sandal,… weak muscle tone (she pulled the baby up by the arms),… check the heart, we’ll also have to run tests for thyroid problems that are also common in Down’s.” (This was all in Spanish of course)
I grabbed the stethoscope and placed it to the heart of the small child. I turned and reported back I couldn’t hear a problem, no murmur, no extra sounds. She confirmed but reminded me this does not mean there is not a heart problem so more tests must be run.
Now she turned and took a seat in front of the parents.
“So you child has Down Syndrome,” she looked at them with a calm and confident face. “I’ll explain what it is.”
She then explained to the Bolivian family from the campo, with very little education, what a chromosome is, what trisomy 21 is, how we have pairs of information that determine who we are, how in Down syndrome they do not separate correctly. How it was nobody’s fault but the lottery of life. She even drew a picture of pairs of round circles each numbered, then an extra circle at the number 21 that had an arrow pointing to the words Down. The fathere was leaning over with his elbows on his knees nodding that he understood. The mother was standing with the bundle in her arms, staring into it with a mothers love, rocking it back and forth, back and forth. Dr. T then began to explain to them what to expect, about the delayed development, about the difference in appearance, and what he will be able to accomplish.
“This is a happy time. You have a beautiful healthy baby boy who will have a great life,” she announced with a smile on her face. “It is going to take a bit more effort and commitment, but he will go to school, get a job, even have a girl, you will see.” She told them how they will have to work with their son, first to build muscle tone, then to walk, speak, and perform basic tasks in school, and eventually to be able to work.
“You just can’t feel sorry for yourselves or the child.” She said these words seriously.
The look on the fathers face is one that I will never forget. He was quiet looking blankly at the doctor. His eyes were welling with tears that never came. His mouth was slightly open but stiff, as if to keep his lower lip from quivering. It was his first child, a son, and he is forever changed. All I can do is watch the mother, swaying her child back and forth, looking into his eyes as if she never heard the doctor’s words.
Dr. T walks over to a shelf and pulls from pamphlets off the top. She then hands them to the parents and me and smiles as she says she’s going to be attending the conference for Down syndrome in Florida.
“There are organizations around to help you with your son and provide you all of the information you will need.” “You and your son are part of a community now.” “This is a happy time.”
They flip through the pamphlet together and look up at the doctor with broken smiles. She hands them the orders for the test they will need to have done and gives them directions at the door as they slowly make their way out of the office with the child in the mothers arms. A child that will never be the same again.