by Dianne I. Maroney

"Just make it through the first year and everything will become much easier." How many health professionals have said this to parents of premature infants as they prepare to leave the neonatal intensive care unit (NICU)? In my 12 years of experience working as an NICU nurse, I said it to many parents. Yet it wasn't until I delivered my premature daughter, weighing 790 gm at 26 weeks, that I began to understand the reality of the crisis that parents endure in the first year of their premature infant's life.¹"

There is a wonderful illusion presented by the medical staff and believed by parents: When a premature infant is discharged home, family life will settle in, calm down, and become somewhat "normal". However, the crisis that begins in the NICU often continues after discharge, as a result of the overwhelming medical needs of the infant, and the recurring grief and emotional devastation that the family of a chronically ill child must cope with.

This "continuing crisis" is frequently unrecognized by professionals. It is essential that medical professionals, both during the NICU course and later in the follow-up setting, appreciate the intricacies of a premature infant's first year of life so that they are better able to educate parents, facilitate an easier transition to home, and prepare them for the possible difficulties ahead.

Although our daughter Mackenzie's first year of life was unique to her, other premature infants certainly share many experiences and have similar needs. I would like to share with you some of my family's experiences and suggest ways health professional can better assist parents during these overwhelming first 12 months.

Transitioning To Home

As I reflect over my daughter's first year of life, I am struck by the life we have lived. Even though Mackenzie was very premature, she had a fairly stable hospital course. The hospital staff, my husband, and I shared in the typical illusion that things would progress and Mackenzie would do well once she came home. However, the crisis that began in the NICU continued and in some ways intensified. Our lives remained in turmoil.

Although Mackenzie was discharged with only a nasal cannula for oxygen, she was still a child with special needs. She was sensitive to stimulation, had increased calorie needs, was developmentally delayed, and her respiratory status was very unstable. After 3½ months of around-the-clock NICU care, my husband and I were suddenly left to ourselves to assume the roles of nurses, doctors, and parents.

Mackenzie's first night home was quiet and uneventful, but she soon began crying constantly and stopped eating. Over the course of 5 long weeks, during which she received orogastric and nasogastric feedings, she failed at numerous attempts to improve nippling, received a variety of medical managements, and was seen in consultation with medical specialists. Finally her care was transferred to a graduate preemie specialty clinic. She underwent a Nissen fundoplication (and button placement) that relieved her esophageal pain and improved her ability to receive more calories. This time at home was as stressful as the 14 weeks in the hospital.

Transitioning to Pediatrician

Graduates from the NICU can present a tremendous challenge to health care professionals.³ Many general pediatricians or family practitioners may not feel comfortable with nor realize the complexity of these infants with multiple medical needs. Our initial visits with Mackenzie's first pediatrician were extremely frustrating because I did not feel he saw Mackenzie as a child with continuing problems. He did not listen to my observations and was not supportive of my concerns. It wasn't until we began taking Mackenzie to the multidisciplinary, graduate preemie clinic that the management of her care was assumed by the proper medical professionals. The staff at the clinic listened to me and dealt with my concerns and Mackenzie's needs.

In discussing our frustrations with other parents and the staff at the clinic, we quickly realized that a frequent complaint from parents of premature infants is poor communication and lack of support when transitioning to their pediatrician (even pediatricians with the best reputations). A large majority of physicians are not educated during their training about the multidisciplinary needs that families with special-needs children require. Many have not had the opportunity in their practice to further their education in this evolving area. For those physicians who are educated, it is frequently difficult to manage these complex patients because of the time required and the cost of care. As a result, families frequently feel lost and are unable to receive the care they need.

Coping with the Emotions

Beyond Mackenzie's suffering, the most difficult part of the first year was coping with our grief. Days and nights were filled with fear, depression, anger, frustration, sadness, guilt, disappointment, self-doubt, joy, and triumph. As another parent wrote, discharge did not stop the well-noted roller coaster ride, it only made it lonelier.⁴