Only Time Will Tell

    The baby is lying on a warming table, his arm shaking uncontrollably as he cries. A medical student watches as the nurse washes the baby, who was born only a few minutes ago. The baby's cry is unusually high-pitched. He has little ability to self-calm. Each time he tries to place his hand near his mouth, he is unsuccessful and seems to get more frustrated. The baby's father anxiously waits in the corner, not sure of the activity around him. Concern is worn on all of the faces surrounding the crying and tremulous newborn.

Day Two

      A few days have passed and much information has been gathered about the baby, now named Jonah. Jonah's toxicology screen was positive for both methadone and cocaine. Jonah's mother, Karen, had been taking methodone during the pregnancy.

      I met Karen 3 weeks ago. She was part of a group of mothers on methadone with whom I was asked to talk. The mothers-to-be wanted more information about the effects of methadone on newborns and what it would be like for the babies going through drug withdrawal. Karen was quiet during the video I showed of a newborn withdrawing. After many of the women left, Karen expressed interest in learning the infant massage techniques we were using to calm babies. She also told me how she became addicted to pain medications 10 years ago after a back injury and was later turned on to heroin by a boyfriend. The use of heroin led to her eventual addiction. Although Karen had not been on heroin during this pregnancy, she was taking methadone, a legal substitute for heroine. She greatly feared the birth of her baby and did not know what to expect. Her 5-year-old son had previously been removed from her custody because she was unable to care for him. I remember her telling me that her new boyfriend, who was also on methodone maintenance, was excited about the arrival of his first child.

      Jonah was in obvious withdrawal shortly after birth. His jittery movements and crying persisted for the next 2 days and there was little anyone could do to console him. He scratched his face trying to get his hands to his mouth. His knees and elbows were rubbed raw from his agitated movements, and the muscles in his tiny legs were so stiff that it was difficult to straighten his legs to diaper him. Jonah was given low doses of methadone to help him through withdrawal.

      Karen was still hospitalized because Jonah was delivered by Caesarian section. I went to visit her and found her awake and on the telephone. She hung up when she saw me, but she didn't seem to remember me.

      "Karen, my name is Janet Cruz and I met you a few weeks ago. I've seen your baby, Jonah, in the newborn nursery and wanted to congratulate you and see how you are doing."

      "Oh, now I remember you," Karen replied. "I'm still in a lot of pain from the C-section and not thinking clearly. How is my baby doing? Do you know when he can go home with me?"

      Karen began to get teary and somewhat groggy from the pain medication. She had been told by the physician that her baby would be in the hospital for at least 2 weeks and possibly as long as 6 weeks.

      "Karen, it must be hard to think of going home without your baby," I sympathized." As I explained before, it will help Jonah if he can be weaned slowly from the methadone. I would like to work with you and show you the infant massage strokes so you can help calm and comfort Jonah during his withdrawal."

      Karen agreed to meet with me but was not sure how she would be getting to and from the hospital. Her mother usually provided her with rides, but she was out of town. She said she didn't think she had the energy to walk to the bus from her home, but she would try to come by the nursery before being discharged the next day.

Day Five

      Karen and her boyfriend, Pete, were in the newborn nursery tending to their baby. Pete held Jonah as Karen tried to cut the baby's fingernails. She was absorbed in her task, insistent on cutting Jonah's nails short so he would no longer claw at his face. The baby was sedated due to his agitated state. I approached the family to talk to them.

      "Karen, I am so glad to see you again. How are you feeling?"

      Karen introduced me to Pete. She was still in pain and again seemed sad and teary-eyed while holding the baby. Jonah was still irritable and having some difficulty feeding. He seemed to know his mother's voice and quieted as she talked to him. I tried to provide some support to Karen, "It seems like Jonah really knows your voice. He's calmer with you around. "

      As I talked to Karen, Pete faded into the background as though he wished not to get involved. He was quiet and seemed particularly shy and nervous around the nurses. I asked Karen and Pete if they would like to videotape Jonah and learn infant massage. Karen said that she was in pain from her C-section and had another appointment. Another time was scheduled to work with the baby. In the meantime, the parents were encouraged to visit the nursery at any time of day and to contact the developmental specialist if they had questions.

Day Six

      Jonah was weaning slowly from the methadone and beginning to have some calmer wakeful periods during the day. While caring for Jonah, a nurse noticed sudden jerky movements. Jonah appeared to be having a seizure. A developmental specialist was equally suspicious of seizure activity. When tremors were noted again later in the day, a neurology consultation was ordered and seizures were confirmed. Jonah was transferred to the neonatal intensive care unit because his seizures were difficult to control and the physician wanted him to be monitored closely.

Day Seven

      Karen was called regarding Jonah's seizures. She came to the NICU and appeared to be very scared. This time her mother came with her. The physician discussed Jonah's new problem and the need for him to take phenobarbital three times a day to control his seizures. Later in the day, the neurologist also told Karen that her drug use may have contributed to Jonah's seizure disorder. Obviously upset, Karen withdrew to her baby and cried quietly. Her mother also appeared shaken up by the news, but she directed her efforts to comforting Karen.

Day Ten

      During medical rounds it was noted that Karen had not been visiting Jonah regularly, although she called once or twice a day. Jonah remained unstable and his seizures continued to be uncontrolled. He was weaning from his methadone and only receiving it two times a day. His primary nurse was becoming very attached to him. She put a mobile on his crib and she held and played with him when she was on duty in the nursery. Various team members discussed what seemed to be an unstable home situation; however, no one had actually been to Karen's home. A home visit by the social worker or home health nurse was scheduled.

      Karen called the nursery and I asked to talk to her. I emphasized the importance of her visits to the nursery, explaining that these visits are especially important for a mother with a history of substance abuse. I also scheduled a time to meet her in the nursery to instruct her in infant massage.

Day Twelve

      Karen kept her appointment in the nursery and looked good when she arrived. Her mother, who had been providing her with rides to the hospital, accompanied her. Karen said that Pete was reluctant to visit the hospital because he didn't feel welcome in this environment.

      I videotaped Jonah and Karen with the infant massage therapist. Karen was shown basic massage strokes with emphasis placed on reading Jonah's cues. Karen quickly picked up what was shown and interacted nicely with Jonah. I reinforced the fact that Jonah seems to know Karen's voice and reacted well to her touch. He is clearly calmer when Karen is around. I encouraged her to visit as often as possible because her calming influence may help him withdraw more quickly.

      Karen talked more freely as she massaged her baby, mentioning that she felt uncomfortable coming to the NICU because it seemed as though everyone was watching her. She felt labeled as a "drug mom" and talked about how guilty she felt about Jonah's seizures. Karen admitted to having used cocaine the night she went into labor.

      "I was terrified about going into labor," Karen said, "and heard all these stories about the nurses in the labor room. My friend told me the nurses are mean to mothers on drugs and don't give them medicine during delivery. I was so scared about the pain that I took the coke to relax."

      Karen's mother listened, but said nothing. Later, in private, she told me that she felt guilty about not being there for Karen when the baby was born. She wanted to help Jonah and Karen but was not sure what would be best.

      After talking to Karen and her mother, I asked them if they would be willing to meet with the doctors and nurses to try to prepare for Jonah's discharge. This would be a way to get the staff together to have them talk to Karen at one time. I promised Karen that I would be present and advocate for her.

Day Thirteen

      During medical rounds the next day, the staff discussed Jonah's mother again, berating her for not visiting him more often. Jonah was taking methadone once a day and doing well. His seizures were under control with phenobarbital and he was expected to be ready to go home in a week providing his mother had discharge training.

      I told the staff that I met with Karen and her mother the preceding day and described the positive interaction Karen had with her baby. I also mentioned that Karen had difficulty coming to the hospital due to transportation problems and that she felt alienated by the medical staff. I discussed the possibility of a care conference, so the treatment team could meet and talk with Jonah's family. One of the nurses remarked that Karen made many excuses about why she could not visit and they were not sure she was invested in the baby. They agreed that a care conference would be helpful since the plan was to send Jonah home.

      A care conference was planned for the next day. The treatment team, which included the neonatalogist, neurologist, pediatric resident, primary nurse, social worker, discharge planning nurse, and developmental specialist would meet for 20 minutes prior to meeting with the family. The goal of the staffing would be for the team to share information and suggestions in working toward a discharge plan. Selected members of the team would meet with Karen to discuss important medical and developmental issues as well as important goals to help in Jonah's transition to home.

Day Fourteen

      The care conference was scheduled to take place in the afternoon, but Karen came to the hospital earlier to be with Jonah. Pete was still reluctant to come to the hospital and chose not to attend the meeting. Karen's mother, however, said she would go to the meeting with her daughter.

      Karen was obviously anxious about the afternoon conference. I tried to explain what to expect and told her the staff would meet together first so they could discuss what was needed prior to discharge. I asked Karen to write down her questions regarding Jonah's home care. I encouraged her to ask questions, especially if she did not understand what people were asking or telling her.

      During the staffing prior to the care conference it was clear that certain team members do not think Jonah should go home. The primary nurse was especially upset at the prospect of Jonah going home with Karen. She worried about Karen having a relapse and the impact this would have on Jonah. The social worker informed the team that there was not enough evidence or reason to make a referral to Child Protective Services. The neurologist felt Jonah was ready to go home since he had been seizure-free for a week. The plan was for Jonah to be completely weaned from his methadone over the next day. Then he was to remain methadone-free for 3 days before going home. Karen would spend a night in the nursery with Jonah prior to discharge. A final recommendation was for the parents to be trained in cardiopulmonary resuscitation, because infants who have been exposed to drugs have a higher risk of sudden infant death syndrome.

      Karen and her mother joined the pediatric resident, neurologist, and myself. They were informed about the plan to send Jonah home within the week. This was clearly good news to Karen, and she began to ask questions regarding his seizures and medicine. It was recommended that, at least for the first month at home, Jonah be seen twice a week by a home health care nurse and every other week in the pediatric clinic by the pediatric resident who cared for him in the NICU. Developmental follow-up was to be coordinated with the nurse's home visit or Jonah's pediatric clinic appointment. Karen agreed with the plan and was relieved to have a nurse coming to her home. She was very willing to bring Jonah to medical appointments at the hospital, although transportation continued to be a problem. I let Karen know that we could arrange to have Jonah's Medicaid pay for a taxi to bring him to medical appointments.

      Karen planed to spend the next night in the nursery and both she and her mother were scheduled for CPR classes. Karen was encouraged to have Pete receive CPR training as well. A developmental follow-up was planned to take place in Karen's home a week after discharge. Another meeting with the infant massage therapist was scheduled prior to discharge. Karen was encouraged to use the massage, especially before feeding Jonah since that had been helping him with gas. Jonah ate quickly and was generally frantic around feeding time, causing him to swallow a lot of air. His primary nurse also agreed to work with Karen to show her ways to calm Jonah.

Day Nineteen

      On Jonah's 19th day he went home. Karen spent the night and, according to the nurses on the night shift, did well. Karen had been coming to visit her son more consistently after the care conference in which she learned of Jonah's discharge. Pete came to a CPR class, as did Karen and her mother. Jonah was successfully weaned off methadone and, although he still had some jittery movements and stiffness in his legs, there had been great improvements. Jonah was able to remain awake and alert for longer time periods and appeared to enjoy interactions with his parents. Even so, Jonah was still easily over-aroused and liked to be wrapped tightly in a blanket. Karen was able to calm him with massage, and a pacifier often helped to keep him contented.

      It is difficult to know what will happen with Jonah in the future. Karen has been a drug addict for 10 years, and Pete has a history of using a variety of illegal drugs. Although they seem committed to working with Jonah and trying to avoid all drugs except Methadone, only time will tell. The treatment team hopes the support Karen and Pete were given in the nursery and ongoing follow-up appointments scheduled to occur at home will help them remain motivated to provide a supportive environment for their young son's development. Perhaps Jonah will make a difference in their lives.

This case story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

Only Time Will Tell Discussion Questions