An Avalanche on the Slippery Slope
In January 1987 I was 21 weeks into a triplet pregnancy and in labor. On my admission to the hospital, my husband asked the perinatologist about our options. "You don't have any options," the doctor replied, "your wife is in labor!"
It was a lie that we had no options, but we didn't know it at the time. Horrible as it sounds, abortion would have been an option. I don't know it that's what we would have done, but the decision should have been ours.
We knew that if babies make it beyond 32 weeks, they have a better chance for a healthy outcome. We tried to get information about how well this particular center had done in maintaining pregnancies to a "safe" gestational age. However, no one was willing to talk to us about it.
At 27 weeks our triplets were born, each weighing about 1000 grams and each gravely ill with the predictable complications of extreme prematurity.
Two days after the boys were born,
we learned that the longest this center
had ever forestalled preterm delivery with IV tocolytics was 10 weeks,
that was not with a multiple gestation. In other words, the perinatologists
knew from the onset of my labor that I would almost certainly not make it
In the NICU, with a new group of physicians, we hoped we would have a better experience, that perhaps here our right to information and our right to be part of the decision-making process would be honored.
We soon learned that it would not be. Within 24 hours of his birth, Bobby, the first of our triplets, was hemorrhaging severely into his lungs and brain. I gathered every ounce of courage I had to ask the question I thought any responsible loving parent would ask: "At what point do we say 'enough is enough' for this little boy?" The neonatologist answered, " You don't make these decisions! We do!"
Shocked by the coldness as well
as the content of this response, I murmured a "thank you" and walked
away. Waves of guilt rolled over me. How
could I ever ask such a horrible question? These doctors must love my baby
more than I do! I was afraid to tell anyone else what I had asked the
Finally I summoned the courage
to tell my husband about my question to the neonatologist. "Good!" he exclaimed. "If
you hadn't asked, I would have!
What did the doctor say?" When I told him, he couldn't believe that we
once more in a position with so little control over our destinies and those
Several days passed with no signs of bleeding in our other two sons. "I think we're in the clear with these two," said the neonatologist as he left the unit for the day. By the next night, however, we learned that each of our sons had sustained Grade IV intraventricular hemorrhages. As bad as Bobby's bleed had been -- destroying at least one-third of the left side of his brain -- Billy's bleed was worse. Charlie's bleed was smaller, but a Grade IV bleed nonetheless.
PDAs, surgical ligation, ventilators,
apnea, steroids, surfactant, infection, shunts -- our babies had it all.
Many of our babies' treatments,
we later learned, were experimental, unproven, or poorly validated. However,
our right to information about these therapies and our right to informed
Nevertheless, we tried to keep
up. We diligently read our babies' charts, looking for information and consolation.
This made us none too
popular with the staff physicians or with many of the nurses who became
hostile, defensive, and heartless in their dealings with our family. There
were a few nurses, thank heavens, who had "been around the block a
and had questions of their own about the wisdom of aggressive treatment in
cases such as ours. They were compassionate to us and our babies. There was
also the cardiologist who came in to examine one of the boys. He saw the
More typical of our encounters
with the staff was the one had with the rounding neonatologist. He seemed
a pleasant enough man, younger than many
of the doctors in the group. I wanted someone to talk to about my fears of
taking home and caring for three sick babies. "Well," he said, "if
I doubt that any adult would willingly tolerate the sort of painful, invasive medical treatment that was forced on my sons. Our son Billy had been something of a free spirit when he was born. The biggest of the triplets, with Apgars of 9 and 9, he was the one I had the most hope for when I first saw them in their isolettes. In the beginning, he'd put his feet on the sides of his "cage" as if to say, "Look out world, it's me, Billy!" But as life came to mean pain for him, little by little his free spirit was broken. I watched in anguish as the biggest of my babies became the smallest.
Billy endured four surgeries before he left the hospital. He went into cardiac arrest during one operation, and the radiologist's report suggested that this episode caused a second brain bleed. When we asked the anesthesiologist to explain what had happened to our son, he tried to minimize the incident and its implications. We never got what we felt was a satisfactory explanation.
We now know that such complications
can result from the common practice of performing surgery on premature babies
with little or no anesthesia.
Although we were told our son was given anesthesia, we still wonder if this
is true, and if so, whether he was given enough to relieve the pain of his
For example, when I tried to persuade
the neonatologist to give Billy medication for his terrible postoperative
pain, the doctor refused saying he
didn't know that babies felt pain. But I could see my son's pain in his
color, his expression, and his positioning. When I came in the next day, I
found Billy -- my little free spirit -- tied by his wrists to the side of
isolette! The one-on-one nurse had done it to make her job easier. I never
saw my son's free spirit again. Billy is still alive, but he is not the
A few days after Billy's surgery, Bobby needed the same operation. Concerned that Bobby, like his brother, might suffer further brain damage during surgery, I told the anesthesiologist that if Bobby should "arrest" during the operation, I didn't want him to be resuscitated. "You can't ask me to be your executioner!" was his icy reply.
We requested a meeting with the
ethics committee. When my husband, my father-in-law (a physician), and I
got to the meeting, we found the ethic
committee consisted of five of the unit's eight neonatologists, a social
worker from the unit, and the nurses involved in our boys' care. The meeting
Our boys eventually all came home
from the hospital. Each is multiply-handicapped. All three have cerebral
palsy. Billy is almost
totally blind. Billy and Bobby both have seizure disorders and both are
We take what consolation we can from our knowledge that it could have been much worse. Despite their cerebral palsy, all three boys can walk. Billy does see a little bit at close range from one eye, and that's a whole lot better than seeing nothing at all. Bobby is a courageous child who tries to keep up with his peers even if it means getting hurt. He tolerates the stretching of his tight muscles and tries to be brave when he has to go to the hospital. Charlie is a child much older than his years. He has watched his brothers seize and his mother panic. He defends his brothers from bloodwork by threatening to lock up the needles and arrest the nurses. But the joy we feel at the successes of one child can never diminish the pain we feel at the suffering of another.
In a past life when I was a county case manager, my specialty was developing and implementing services for disabled and medically fragile children. It is ironic that I now confront this challenge personally. Giving my children what they need from me as a mother is all consuming. Getting them the help they need from professionals is a constant battle. My husband and I have exhausted every internal and external resource available to us to help our children reach their potential. Not one of the neonatal staff who labeled us "bad parents" has offered any kind of support, encouragement, or help in meeting the ongoing needs of our children. In the NICU our parental rights and responsibilities were denied and denigrated. Now that the truly difficult lifelong work begins, we find that the responsibility is ours and ours alone.
Luckily, we have more resources to draw upon than most. Not every special needs family comes equipped with a mother who was a county case manager, or a bright articulate father with insights into the needs of children that some professionals never develop. Not every family has a grandfather who is a doctor, an aunt who is a nurse, or a pediatrician who actually makes house calls. Luckily we have all these things, otherwise we could never have survived.
Several years ago I heard the story of a 17 year old mother arrested in the death of her three month old baby, a preemie who had recently been released from the NICU. As is often the case, this premature baby didn't cry when it was hungry so the mother didn't know when to feed it.
I couldn't help thinking, "There but for the grace of God go I." If it took a family like ours every ounce of strength, courage, and ingenuity we could muster to negotiate the system and simply survive from day to day, what kind of chance did this 17 year old girl and her baby have?
In my spare time, such as it is, I serve on a variety of boards and commission established to insure the provision of services to infants with special needs and their families. I want to make sure that society doesn't forget its responsibility to these kids and their families. I also want to make sure that the neonatologists creating these tragic situations are constantly reminded of the consequences of their actions.
I intend to advocate for the rights
of parents to make humane medical decisions on behalf of their critically
ill newborns. Some people feel that
allowing a marginally viable newborn to die a natural death is a dangerous
first step down the slippery slope to Nazism, murder of the disabled, and
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