There is only one group of people in the United States that are required and forced by law to accept medical treatment. The argument is that this group of people are not rational autonomous individuals and that they are not able to give free and informed consent. In 1984 Congress amended our laws to mandate that all infants born in the United States receive medical care. No matter how sick or disabled, all newborns must be treated regardless of the wishes of the parents. This law is known as the Baby Doe Law.
The law came about as a result of a baby born with Down Syndrome whose parents declined surgery to fix a tracheo-esophageal fistula, leading to the baby’s death. The law is intended to protect the rights of the disabled. Prior to 1984 children born with a disability were not given aggressive treatment if their parents chose against it for any reason or if doctors deemed it inappropriate. But did federal law go too far in its effort to ensure that children were not allowed to die simply because they had a disability? Did Congress write a law that was overly restrictive?
Concerns about a child’s quality of life, which are often the primary factors in deciding to withhold medical treatment from premature infants, were no longer seen as valid reasons for withholding medical care. I had been a nurse for only a couple of years and in those days the physician was all knowing, all mighty and no one dared question his orders, much less speak to him. When a physician would enter the nurses station the nurses had to stand up and offer him their chair. While making rounds on his patients the charge nurse had to follow behind him carrying all of his charts.
A young pregnant woman, who will be referred to as Susan, was home alone. Her husband was in the military and serving outside of the US. She had been sleeping when she was awakened by a trickling of fluid. She got up and went to the bathroom and was relieved that the fluid was not blood and believed it was only urine. Returning to bed she once again felt a small trickle of fluid leaking. Being afraid, she called a cab to take her to the hospital. I cannot tell you the year, the season, the real name of the mother or what her face looked like, only that she had dark brown hair.
Many of the facts quickly disappeared from my memory. The only memories that have remained with me are those directly related to the birth and death of the tiny baby boy. When Susan arrived, my co-worker, who will be referred to as Mary, and I put Susan to bed and applied the fetal monitor. The three of us were relieved that the baby’s heart sounded strong and was beating at a normal rate, however she was having some small contractions. The patient reported that she was 22 weeks pregnant but had not had any prenatal care because she and her husband did not own a car.
Susan had tested negative for any leaking of amniotic fluid. Mary sent me to call her obstetrician while she started an IV to bolus her with fluids. The doctor gave me some orders and said to call him if the contractions continued. Returning to the patients room I heard the patient screaming “the baby just came out”! As I rounded the corner into her room she was lying on the bed sobbing, with her hands covering her face. Mary was busy at the end of the bed, she had grabbed a wash basin and shoved it under the covers along with a receiving blanket.
Seconds later she carefully and quietly slipped the basin out from underneath the covers and handed it to me and told Susan that the baby was a stillborn boy. Susan cried out loudly and I whispered to my co-worker “shouldn’t we ask if she’d like to see her baby”? “No she replied take the baby to the nursery“. I took the basin into the nursery, set it down on the counter and put a clean paper liner on the scale and made sure the scale was balanced to zero. I then picked up the little bundle wrapped in the receiving blanket, placed it on the scale and removed the blanket.
He weighed 1 lb 4 oz and was 29. 2 cm long. I noticed his little nostrils were open, his skin had a slightly blush hue and he had fingernails. Suddenly the tiny boy began to move and he took a deep breath and in doing so it appeared his entire chest would cave in as he struggled to get oxygen. I immediately placed him double blanketed in the preheated warmer, applied oxygen per face mask and turned to call a code blue when I saw the the pediatrician standing in the doorway, I said “hurry this baby is alive and I grabbed the equipment for an umbilical IV.
The doctor said “no stop, do not do anything, do you understand me“? I said “but this baby is alive“. “No” he said, “the baby is not alive, do you understand me“? Being a young naive nurse I felt powerless and too scared to move. “But he is alive” I meekly replied. He said “no he’s not, there is no way this fetus will survive and if he does he’ll have so many health problems his life won’t be worth living”. “Take him out of the warmer, take off the oxygen, cover him up and leave him in here he won’t live long, maybe minutes“. Shouldn’t the mother be allowed to hold her dying son“? “The mother has been told that her baby was born dead, has been sedated and is sleeping. “How do you think it will look if she knew that her baby was born alive and we did nothing to save it? I think we’ll all be sued. I don’t want to be sued, do you“? So there I was with a tiny baby boy who was alive and being instructed to let him die. I removed the oxygen and took him out of the warmer but I could not put the little boy down.
I sat in the wooden rocker and held him to my chest, I quietly sang “Hush Little Baby”, “Rock-a-bye Baby”, and any other lullaby that I knew at least half the words of and I cried. Cried because this tiny life was being allowed to die and cried because the mother did not know that her son had survived his birth. I felt an incredible sense of both guilt and gratitude to hold this tiny boy as he died. He held my little finger. I caressed his tiny cheek to mine. His respiratory rate was 8 per minute, his heart rate was barely 40 beats per minute. This tiny baby boy lived for another 2 hours.
My tears dried when he took his last breath. I felt relief that he had gone into the light, he was in heaven now and no longer had to use his entire tiny chest to fight for a breath of oxygen. Mary had not entered the nursery since the baby was born. I bathed and dressed the baby. I took his nursery photo and took his footprints. I looked at the little boy. I felt he looked more like a 23-24 weeker. I thought how sad, how tragic that Mary hadn’t even taken a brief moment to notice that the little boy had finger nails and that his nostrils were open.
The pediatrician hadn’t looked at the baby nor even asked how much he weighed. I then ventured out of the nursery to find Mary who was standing out in the hallway talking on the phone. I asked Mary “How could this have happened, didn’t you know the baby was born alive”? “Yes”, she said “I knew the baby was born alive but I also knew that at 22 weeks gestation the baby could not have been saved, not even in the best NICU in the country, much less here in a level I nursery”. Mary said the mother had asked to see her baby just moments ago.
I handed the baby to Mary and told her I could not face the mother without falling apart. Mary took the baby and disappeared into the mothers room. The day shift nursery nurse had arrived and I promptly clocked out and left the hospital. I later came to realize that the baby would not have survived despite our best efforts. Nevertheless, it was handled callously, no consideration was given to the grieving mother. Had he been born in today, rather than some 30 years ago, he may have had a good chance of survival.
Today preemies born as early as 22 weeks gestation can technically survive. Who can say with accuracy that a preemie is not 23 or 24 weeks gestation rather than 22 weeks? Who should make the life or death decisions for a preemie and if the decision is made against resuscitation or aggressive treatment, should the decision be made on the basis of a probably negative outcome? What is considered negative? Could more tolerance, on the part of the parents dramatically increase quality of life for their child if they were allowed to chose life?
The advantage of not initiating treatment, in my view, is only that it “feels” better because less will be known about the individual child and he will be only a statistic. Allowing a 22 weeker to live for 2 weeks and then being found to not have brain damage, is a child who would otherwise have been left to die solely on the basis on their gestational age. Preemies believed to have been born at 22 weeks have statistical risks of multiple disabilities. However, many life long disabilities are not diagnosed until long after discharge.
Major disabilities like blindness or cerebral palsy, are diagnosed in the first two years, school-age preemies run a risk of having behavior difficulties, ADHD or learning disabilities that cannot be diagnosed in early childhood. Drawing conclusions about negative outcomes is difficult and highly individual. A couple may say that they don’t want to raise a mentally retarded child is this a sufficient reason for being allowed to die? When leaving the hospital some preemies may be diagnosed with a level of brain damage, some may be believed to be blind or deaf but do these diagnoses say anything about these children’s quality of life?
I am far more at peace with my impending disability of blindness than I am with any yet undiagnosed diseases. Should physicians have the power over the infants mother? Should we work to restrain the role of the physician? Is this decision of power exclusive to today or should it have been considered some 30 years ago? While knowing that the baby boy would not have survived, I believe the mother had the right to know that her child was born alive.
I believe the mother suffered a second tragedy in not being allowed to hold her baby while he was alive. The nurse, the mother and the woman in me today would have stood up to my co-worker, would have stood up to the pediatrician, would have, no matter the cost, allowed the mother the privilege of rocking her baby boy as he left this world. I believe there is a young man in heaven who understands and forgives. I believe there is a young man in heaven who is grateful that, for that brief period of time, a total stranger loved him completely.