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.
Friday, June 4, 2010
Tuesday, March 23, 2010
Going for Donuts
“Can we go to donuts in the morning” Christian asked. About twice a month I take the kids to donuts before school. They ask more often but I try to limit it for nutritional reasons. My wife thinks that I take them too much as it is. So the other night when my son asked if we could go for donuts I said “maybe” and he knew that a maybe was as close to a no as he was going to get. He would ask again in the morning and I would say “Not today, bud, maybe next week.” Anyway, after asking he went to bed and I stayed up watching the television before going to bed myself.
The call from the hospital came at four in the morning. A woman with twins, one healthy and one with holoprosencephaly, had shown up in labor and they were going to perform a c-section. They wanted to know if I’d come in for the delivery. Of course I said. Probably the thing I like most in my work is attending a delivery. There is so much excitement in the room. If all goes well I get to see a life enter the world and be part of one of the most important events in people’s lives. If there is a problem and the baby is sick, well then I know what steps to take to hopefully make things better. For this case there would not be much for me to do, but I knew the nurses wanted me there to help things go smoothly.
In truth, I had forgotten that she was out there in the community. The mother with the twins. I had met with her a little over two months before the delivery. That was when the Obstetrician called me and asked if I would talk to a woman with twins. One of the twins was healthy and the other had holoprosencephaly. Holoprosencephaly is a deformity of the brain in which the cerebral hemispheres fail to divide. Like most conditions in medicine, there is a wide range in presentation with some babies looking perfectly normal and having mild mental problems to those that are severely affected with obvious physical and neurologic abnormalities. These severely effected babies often die shortly after birth. When I met with the mother two months prior she said she understood that her infant was severely affected and would not survive the delivery. I tried to explain to her that there were limits to prenatal diagnosis and that I had seen babies live up to a year even when they had major abnormalities. I explained that no one could predict how long her little girl would live. I then asked how she would like for us to care for her daughter and she stressed that we only provide comfort and not perform any resuscitation.
The delivery was by c-section and the boy was born first. He came out crying, active and pink. There was a quick cheer in the room and the Obstetrician held him over the curtain so the mother and father could see him. She then handed the little boy to a nurse who placed him under a warmer. I checked him out with the nursing staff. We warmed him, dried him and rubbed his back. We suctioned out his mouth, gave him a shot in the leg and one of the nurses made footprints on a thick, paper card. He was doing just fine. Next the Obstetrician pulled out the girl and handed her to a nurse who then laid her under the warmer. The newborn had a small, thin body. Her head, however, was quite large. She had hydrocephalous, so her face was of normal size but her head swelled out above her eyes. Babies with severe holoprosencephaly also have midline physical defects and this little girl had closely spaced eyes and a large cleft so that her mouth and nose came together to a central whole. Flaps would open and close around this central hole when she cried. Her cry was hoarse but she was quite active. “What should we do?” one of the nurses asked. “Well, we should rap her in a warm blanket for starters,” I said. We also put a cap over her head. I motioned for the father to come over. He was a quiet and gentle man. He looked at his son first. He placed his hand gently on his head and smiled. Then he asked if he could hold his daughter. I said of course and we handed her to him. He held her, looked into her eyes and told her that she was beautiful.
Before leaving I walked over to the mother who was lying on the operating table looking into a blue drape. I told her that her son was healthy and doing just fine. She smiled and I could see the joy in her face. Then I told her that her daughter was severely affected but alive. She was breathing on her own and active. We could both hear the girl’s raspy cry. I told her that I did not know how long she would live and that she was being held by her father. The mother’s smile vanished. For a moment she had forgotten about the second twin and was allowed to enjoy her son’s birth, but that moment passed quickly. I asked her if she wanted to see her daughter and she shook her head “no”. “I can’t” she said and then added “thank you” probably not really knowing what else to say. She looked away from me and into the blue curtain and I watched as a tear formed in her eye and rolled down her cheek.
I walked out of the room and looked up at the clock. It was a little before 7 in the morning. I had time to get home and get the kids ready for school before coming back to see my patients. On the drive back home all I could think about was the mother and her twins. Carrying them both throughout the pregnancy knowing that one was healthy and that one was sick. Then having to be in the delivery room, overcome with joy for the birth of her son and yet filled with loss for the terrible affliction suffered by her daughter. I thought of how fortunate I was to have five healthy children and I decided that I was going to take them to donuts.
The call from the hospital came at four in the morning. A woman with twins, one healthy and one with holoprosencephaly, had shown up in labor and they were going to perform a c-section. They wanted to know if I’d come in for the delivery. Of course I said. Probably the thing I like most in my work is attending a delivery. There is so much excitement in the room. If all goes well I get to see a life enter the world and be part of one of the most important events in people’s lives. If there is a problem and the baby is sick, well then I know what steps to take to hopefully make things better. For this case there would not be much for me to do, but I knew the nurses wanted me there to help things go smoothly.
In truth, I had forgotten that she was out there in the community. The mother with the twins. I had met with her a little over two months before the delivery. That was when the Obstetrician called me and asked if I would talk to a woman with twins. One of the twins was healthy and the other had holoprosencephaly. Holoprosencephaly is a deformity of the brain in which the cerebral hemispheres fail to divide. Like most conditions in medicine, there is a wide range in presentation with some babies looking perfectly normal and having mild mental problems to those that are severely affected with obvious physical and neurologic abnormalities. These severely effected babies often die shortly after birth. When I met with the mother two months prior she said she understood that her infant was severely affected and would not survive the delivery. I tried to explain to her that there were limits to prenatal diagnosis and that I had seen babies live up to a year even when they had major abnormalities. I explained that no one could predict how long her little girl would live. I then asked how she would like for us to care for her daughter and she stressed that we only provide comfort and not perform any resuscitation.
The delivery was by c-section and the boy was born first. He came out crying, active and pink. There was a quick cheer in the room and the Obstetrician held him over the curtain so the mother and father could see him. She then handed the little boy to a nurse who placed him under a warmer. I checked him out with the nursing staff. We warmed him, dried him and rubbed his back. We suctioned out his mouth, gave him a shot in the leg and one of the nurses made footprints on a thick, paper card. He was doing just fine. Next the Obstetrician pulled out the girl and handed her to a nurse who then laid her under the warmer. The newborn had a small, thin body. Her head, however, was quite large. She had hydrocephalous, so her face was of normal size but her head swelled out above her eyes. Babies with severe holoprosencephaly also have midline physical defects and this little girl had closely spaced eyes and a large cleft so that her mouth and nose came together to a central whole. Flaps would open and close around this central hole when she cried. Her cry was hoarse but she was quite active. “What should we do?” one of the nurses asked. “Well, we should rap her in a warm blanket for starters,” I said. We also put a cap over her head. I motioned for the father to come over. He was a quiet and gentle man. He looked at his son first. He placed his hand gently on his head and smiled. Then he asked if he could hold his daughter. I said of course and we handed her to him. He held her, looked into her eyes and told her that she was beautiful.
Before leaving I walked over to the mother who was lying on the operating table looking into a blue drape. I told her that her son was healthy and doing just fine. She smiled and I could see the joy in her face. Then I told her that her daughter was severely affected but alive. She was breathing on her own and active. We could both hear the girl’s raspy cry. I told her that I did not know how long she would live and that she was being held by her father. The mother’s smile vanished. For a moment she had forgotten about the second twin and was allowed to enjoy her son’s birth, but that moment passed quickly. I asked her if she wanted to see her daughter and she shook her head “no”. “I can’t” she said and then added “thank you” probably not really knowing what else to say. She looked away from me and into the blue curtain and I watched as a tear formed in her eye and rolled down her cheek.
I walked out of the room and looked up at the clock. It was a little before 7 in the morning. I had time to get home and get the kids ready for school before coming back to see my patients. On the drive back home all I could think about was the mother and her twins. Carrying them both throughout the pregnancy knowing that one was healthy and that one was sick. Then having to be in the delivery room, overcome with joy for the birth of her son and yet filled with loss for the terrible affliction suffered by her daughter. I thought of how fortunate I was to have five healthy children and I decided that I was going to take them to donuts.
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