Comfort Care

When Julie was 10 weeks along in her pregnancy she received the wonderful news that she was pregnant with twins; a girl and a boy. When she was 16 weeks along she received the devastating news that something was wrong with the girl. She had a severe form of holoprosencephally; her brain had not developed normally. Julie was told that her daughter would likely die before birth or in the delivery room. When I was asked to speak with Julie, I explained that her daughter may live as long as a year but this news did not take root. Julie was now 36 weeks along and had been thinking for the past 20 weeks that her daughter could not survive. She had undergone a process of denying the very existence of her daughter. There were express instructions for the ultrasounds to not include the girl. Julie and her husband did not tell friends that Julie was having twins, not even to their own children. Julie found my news very troubling. I had to ask her what she wanted me to do for the girl in the delivery room and she said “Nothing invasive.” I explained that if the baby was crying I had to do something and we agreed on comfort care. What I would soon discover was that while we could all agree that we did not want the baby to suffer, nobody could agree on exactly what “comfort care” was and at times it seemed to be anything but comforting.
Comfort care means proving a comfortable environment so that the baby does not experience pain. It also means providing adequate pain control and nutrition. It does not mean intervening in a way that would extend her life, though.
The little girl did cry at birth and we did suction out her mouth, wrap her in a blanket and give her to her father to hold. Was cleaning out her airway comfort care or was it an intervention that prolonged her life. Should we let her gag and possibly aspirate her own secretions. Many of the routine things we did, we did because they were life sustaining interventions.
I asked the father if they had picked out a name for their daughter and he said Michelle. Michelle was not ready to go yet. Michelle would sleep. She would wake and cry when she was hungry and she settled down when you fed her or held her. She particularly liked to be sung to. She had hydrocephalous which meant that her head seemed to bulge out over her eyebrows. When my wife saw her for the first time she said that she looks like an alien; and she was right.
The obstetrician seemed upset that the baby was alive, it was her after all who assured the mother that the baby could not live. The mother held Michelle once but could not bring herself to hold her again so Michelle stayed out in the nursery while the son stayed in the room with the mother. I felt for the mother; I could not imagine how one would start to form a bond with one infant while knowing that another was dying.
Michelle wanted to eat but could not eat. She had a large facial cleft which meant that her mouth and her nose came together in four flaps. One had to drop the formula into the hole and Michelle would attempt to suck, often choke but eventually consume a few drops. She seemed to be in discomfort so the nurse asked if we could give Tylenol. I could not see how it would hurt. The obstetrician said “You don’t honestly think she can feel pain.” I said “I don’t know what she feels, but I know she settles down when you hold her or sing to her so she must have a sense of her surroundings and she seems to have feelings.”
Placing the drops in her mouth was not working. After thirty minutes she could barely consume a half ounce and she kept choking and coughing. Finally I talked to the parents about options. They were adamant that we perform comfort care only. I explained that Michelle was a few days old and there was no way to predict how long she would live. I told the parents that in my opinion we should put a feeding tube down and even consider surgery to place a gastric tube for feedings if Michelle was still alive at a month. I explained that Michelle would likely die from her breathing becoming irregular and then just stopping. She would eventually just stop because the parts of her brain that control breathing were not well formed. The feeding tube would not extend her life but make her life more comfortable. I could not allow a baby to starve. The parents understood and agreed. They didn’t want their daughter to be hungry either. Whether Michelle could feel hunger or not I could not say but she did fall asleep after her first tube feeding and sleep peacefully for the first time in two days.
Even though Michelle spent most of her time in the nursery she did not go for a lack of affection. Her father held her when he could, the nurses caring for her held her and on occasion I would sit and hold her. Nurses brought her clothes and a few came in on their days off to hold and feed her. This little baby who looked so strange and could not even eat on her own had given all of us something very special. By taking care of her, we seemed to be healing something inside ourselves. What I did not know at that time was that she had a few more gifts to give to me and my family.