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I
was called to the delivery room one night to assist with a term infant
because of a small amount of meconium that was present. Meconium
is the substance within the bowels of the infant before delivery, and it
can sometimes signal distress or abnormality in the infant. It
generally requires a pediatrician or other qualified individual to be in
attendance. However, most of the time these babies are born
without complication and are healthy and normal.
In the delivery room, both mother and father were anxious yet happy as
they anticipated the birth of their first baby. The pregnancy had
been uneventful. But when the baby was born, it was immediately
apparent that there was a significant problem. The baby was
anencephalic. This means that there is essentially no upper brain,
and the dome of the calvarium, or skull, is also absent. These
babies generally don't survive the immediate newborn period, and often
they have other significant abnormalities.
The obstetrician immediately handed the baby to me. Even the
father, beside himself in anticipation and excitement, could see that
the baby was not normal. The mother had not been sedated and, of
course, wanted to see her baby right away. The baby did not cry
significantly, but it was not in any serious respiratory distress.
It did maintain a deep bluish color, indicating the possibility of
severe heart disease, which is common in these infants.
The almost instantaneous emotional sweep that takes place under these
circumstances is impossible to describe. One moment everyone is
joyous and laughing, joking and high with the expectation of a beautiful
baby being born and all the possibilities that life holds. Then,
in an instant, emotions sink to the abysmal depth of total disbelief,
anger and despair.
I put my arm around the father as we wheeled the baby over to the
mother's side. I held her hand and explained the diagnosis.
No one could listen carefully at that point. I wrapped the baby up
and asked the father to carry the infant to the nursery. I told
the mother that we needed to do some initial evaluations, but that we
would be back to talk to her soon.
As we walked to the nursery, I asked the father, "What were you
going to name the baby?"
He did not respond but asked me, "Will the baby live?"
I answered, "I need to evaluate him more closely." I
thought about the vigorous interventions attempted to keep these babies
alive for weeks or months or even years, knowing that what we could
do was, perhaps, not even morally correct.
In the nursery, the baby began to breathe rapidly. The evaluation
of the heart revealed a significant heart lesion. The chest X ray
and ultrasound revealed cardiac defects that could not be successfully
repaired. The baby had other problems as well, including
abnormalities of the kidneys, leaving him without normal renal function.
By this time, the nurses had wheeled the mother into the room where I
was examining the baby. After listening to my technical
explanations about the multiple problems this baby had, she simply
looked up at me and said, "His name is John. It means the
beloved one." Then she asked me if they could hold their
child.
We went into a private room where the mother could be comfortable in a
recliner and the father could sit close, and where they could both hold
John and talk to him. I started to leave but they asked me to
stay.
The mother prayed for the baby aloud, then sang songs and lullabies to
her son. She told him all about herself and her husband, their
hopes and dreams. Over and over again she told him how much they
loved him.
I sat spellbound as feelings of despair and hopelessness changed to ones
of intense love and caring. One of the most horrific experiences
of life had been cast upon this couple, an experience that usually –
and understandably – results in anger, hostility and self-pity, as
hopes and dreams of watching your child grow up are shattered. But
somehow within that terrible disappointment, this couple understood that
what was most important was for them to give this baby a lifetime of
love in the very short time they had with him. As they talked,
sang, introduced themselves, and held him tight, they did not see the
physical features that often have been described as grotesque.
Instead, they saw and felt the soul of one small being who had only a
few short hours to live. And, indeed, John died a few minutes
later.
That young couple taught me that the value of a life is not dependent
upon length of time on this earth, but rather on the amount of love
given and shared during the time that we have. They had given all
their love to their son. He had truly been their beloved.
By James C. Brown, M.D.
Reprinted by
permission of James C. Brown, M.D. © 1997, from A 5th Portion of
Chicken Soup for the Soul by Jack Canfield and Mark Victor Hansen.
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