Neonatology and the Rights of Families

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, and 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 to
32 weeks. However, they felt this information was none of our business.

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
doctor. What would they think of such an awful mother?

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 were once more in a position with so little control over our destinies and those
of our children.

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
consent was rarely honored.

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 few times" 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
other two in their isolettes, turned to me and said, "You must be absolutely devastated." I wanted to kiss that man. In a month of one crisis after another, he was the first doctor to acknowledge the gravity of the situation and what we must be feeling.

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 you can't
manage, there's always foster care." Beyond its insensitivity, this response showed the doctor to be shockingly ignorant of the world beyond the NICU. As a county social worker, I had spent the better part of the previous year developing a placement in the community for a medically fragile youngster
whose problems weren't nearly as serious as those of my children. This unique placement outside an institutional setting was so new and unique that it made the local papers. It also cost $300.00 a day.

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
surgery. It is hard for us to trust the staff's "explanation" of what happened to Billy given their lack of candor in so many other matters and their general lack of concern for infants' pain.

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 the 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
person he was meant to be.

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
had two results: we learned that we were "the worst family" the neonatologists had dealt with in three years (the worst before us had a father who was a lawyer and a mother who was a nurse), and we learned that we would have had a "choice" (from among the staff neonatologists) of who would be our sons' primary physician. We chose the doctor who had suggested foster care. Given the alternatives, he was the least offensive.

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
shunted for hydrocephalus. Bobby and Charlie have ongoing respiratory problems. Billy is substantially delayed socially and cognitively. He rarely sleeps through the night.

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
genocide. However the slippery slope extends from the mountaintop in many directions. The slope we are presently descending leads to intolerable medical suffering and unmanageable burdens for infants, families, and society. I, and an increasing number of NICU parents, also see the specter of Nazism in neonatology's indifference to the pain of babies and parents; in its carelessly conducted, often undeclared, medical experimentation; in its authoritarian practices and its contempt for the rights of families. I intend to do everything in my power to help stop this avalanche of pain and to make sure no other family has to go through what ours has endured.
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By a member of the Narof list who wishes to remain anonymous.

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