A mother’s fateful choice

My most difficult obstetric case was not a diagnostic dilemma, but rather an ethical one. Everyone involved agreed on the diagnosis, but the experts split neatly down the middle, each group offering a treatment plan diametrically opposed to the other. We had no difficulty agreeing on the nature and severity of the problem. We just couldn’t figure out what to do about it.

The patient was sent to me, the on call doctor, directly from the office where she had just had an ultrasound exam. The radiologist, an exceptionally skilled clinician, called me to tell me that this was an emergency that required immediate action. She insisted that without a C-section, the patient’s twins would both be dead in a matter of hours. These babies were exceptionally small because their placenta was failing. Oh, and there was an additional complicating factor. They were also very premature, only 27 weeks (more than 3 months early) by best estimate, so prematurely delivering them now would probably kill them.

The mother was a 24 year old woman with a history of 2 normal deliveries. She had shown up for her first prenatal appointment only 8 weeks before, knowing she was pregnant, but unsure when she conceived. The first ultrasound showed a twin pregnancy at approximately 19 weeks. The problems were apparent even then. Both babies were exceptionally small, less than half the expected weight for that point in pregnancy, and an abnormal placenta with sluggish blood flow was clearly the cause. She was counseled that the babies would probably die before they were old enough to survive outside the womb.

A repeat ultrasound at 23 weeks showed that the babies, both boys, were still alive, but had not grown much. Now an ultrasound at 27 weeks had demonstrated that each weighed less than a pound (as compared to an expected weight of two pounds) and both were near death. At 27 weeks of pregnancy, there was a theoretical possibility that they could survive if delivered now.

We called a perinatologist, an expert in pregnancy complications, to consult on the case. She confirmed the findings of the radiologist, and told the patient in no uncertain terms that she expected that the babies would die if not delivered soon. Then we called a neonatologist, a specialist in the care of newborn infants, and he was equally adamant that the babies should not be delivered.

The neonatologist described to the mother the daunting odds that her sons would face, the myriad of possible complications, and the lifetime handicaps that would be expected if they lived. He warned ominously that the NICU (neonatal intensive care unit) of this hospital, one of the finest in the world, have never had a baby that small survive. The neonatologist counseled her that these babies should not be delivered for several more weeks. Delivering them now, he claimed, was the equivalent of a death sentence.

The mother could not decide what to do. Her husband and family arrived, followed shortly by her minister. She asked me what I recommended and I hesitated. I believe that it is the job of a doctor to make a recommendation, even though the decision is up to the patient. She had heard a lot of highly technical and conflicting medical advice and needed help in sorting it out, but I wasn’t sure what to do, either. It seemed like any decision would be the wrong decision.

Ultimately I told the mother that I felt that her sons were going to die no matter what she chose. In the future, though, she would probably look back on this tragedy and wonder if she had done everything she could. So the best way to make the decision would be to imagine what would give her the most comfort during the rest of her life. Would she feel that she had done the most for her babies by keeping them inside and hoping they would survive long enough to have a better chance at life? Or would she feel that she had done the most for them if she had surgery today and consented to very aggressive and probably futile attempt to save them that way? The mother requested more time to pray on her decision.

When I returned, she had decided. She understood, she said, that it was likely her sons would not survive. Nonetheless, she would never forgive herself unless she did everything she possibly could for them. To her, doing everything meant submitting herself to a C-section and consenting to maximally aggressive treatment of the babies.

We assembled a surgical team and two separate neonatology teams, one for each baby. We headed to the operating room for the birth and death of her sons.

The surgery itself was uneventful. The first baby was pulled from the uterus and handed off to the neonatologist. He had only a heartbeat and no other signs of life. He weighed a mere 16 oz. The neonatologist promptly intubated him and began aggressive treatment measures. The baby never responded and died in the operating room.

The second baby was born. He squeaked as he was given to the neonatologist. This boy was even smaller than his brother, weighing in at only 15 oz. He too was promptly intubated, but needed surprisingly little assistance to stabilize despite his dire condition.

This tiny boy had a precarious existence in the NICU, but day by day continued to defy the odds. Ultimately, despite multiple complications and three months in intensive care, the baby became the smallest survivor to every leave our nursery. He went home with some visual impairment due to prematurity and some lung damage due to the long course on the respirator. The last time I saw him was shortly after his fifth birthday. He was small and he needed glasses, but in every other way he was a normal little boy.

What did we learn from this case? To this day, I don’t really know. Never before and never since have I been in a situation with such stark choices and so little hope. The mother made the choice that she thought would give her the most comfort and to our amazement, and hers, a tiny boy survived seemingly insurmountable odds as a result, in the process making history at our hospital.