Find out in this Q&A with the authors of Coming Home from the NICU: A Guide for Supporting Families in Early Infant Care and Development
About the authors
Kathleen VandenBerg, Ph.D, is a neonatal development specialist, consultant, author, and trainer for professionals in the neonatal intensive care unit (NICU) and in early intervention programs. She is currently an academic administrator in the Department of Pediatrics (Neonatology) at University of California, San Francisco (UCSF).
Dr. VandenBerg is also center director of the West Coast Newborn Individualized Developmental Care and Assessment Program (NIDCAP) and Assessment of Preterm Infants ' Behavior (APIB) Training Center. And she provides training in the Family Infant Relationship Support Training Program (FIRST). Both programs provide support to professionals who care for high-risk newborns who may have experienced altered brain pathway development due to unexpected and overwhelming sensory input in the intensive care nursery.
Dr. Hanson is a consultant with the child and adolescent development faculty of the Marian Wright Edelman Institute for the Study of Children, Youth, and Families at SFSU and with San Francisco Head Start. For many years, she has been involved at the national, state, and local levels with teaching, research, and community service related to young children who are at risk for or who have disabilities and their families.
Q: Having a new baby is an exciting and anxious time for any family. For families whose baby requires care in the neonatal intensive care unit, it can be even more intimidating. What are some of the stresses faced by families whose baby is in the NICU?
A: Parents have uppermost in their minds the trauma that their baby has survived. Some parents ask: Will he survive? Then they may ask: Will he develop normally? Parents face unexpected adjustments and stress related to loss of access to their baby, not being able to hold their baby during acute illness, and the seeming loss of the parental decisionmaking process. They report that they feel isolated and have a great deal to adjust to as they "live" in the intensive care unit environment and culture.
Parents also have concerns over the children at home while the baby is in the hospital (which can sometimes stretch into weeks or months). They worry over finances and transportation to and from the hospital, and reactions of family and friends. Parents also deal with numerous people in the NICU who visit the bedside all day longconsultants, physicians, physical and occupational therapists, social workers, and staff members taking test x-rays and lab work.
Q: What kinds of stresses does the baby in the NICU face?
A: The main issue for the baby is the separation from the mother.
Very sick, acutely ill newborns also experience stress from continual treatment and medical procedures (such as mechanical ventilation and/or tube feedings necessary for getting essential nutrients and medications).
There are ongoing assessments of the baby's heart rate, oxygen levels, respiratory rate, and repeated episodes of lab work and x-rays. Treatment in the NICU also means exposure to intensive lights brought down close to the baby's body for best visual access as the staff attend to the baby.
Noise levels vary in a typical NICU from a background level of 50db to high-level sounds that pierce the air every few secondsdoors slamming, overhead speaker systems making announcements, loud alarms at each bedside which signal to the medical staff that the baby needs attention. Each baby may have up to 8 separate alarms of his own.
Q: How does the staff balance the medical needs of the baby with the emotional needs of the mother?
A: This is an ongoing challenge for the staff and they are amazing. Supporting the mother to get to know her baby begins with helping her observe her baby. They help her learn what the equipment attached to the baby means and what are the treatments and procedures that the baby is experiencing.
As mothers and fathers learn about what their baby is experiencing, highly skilled and sensitive nurses show them how to begin to touch a hand or a foot. Babies at very young ages can grasp a parent's hand, and that may mean everything to the parent during the baby's acute illness.
As the baby stabilizes, mothers and fathers are shown WHEN and HOW their baby can tolerate touching and when they cannot. Parents learn to read the baby's physiologic cuesincreased breathing rates or changes in skin color on the face and chest. Using these cues helps parents learn that their baby is communicating to them but on a very different level.
As soon as the baby can be moved, nurses explain to the parents what holding their baby means and what skin-to-skin holding is all about. Parents may see other parents holding their baby against their bare chest or see the baby wrapped in a blanket with the baby's chest against the mother and then the father's. Learning the procedure for taking the baby from the bed to the parent's chest takes practice, but once it is accomplished parents are rewarded when they see their baby sleeps best on their chest, breathes easier, and maintains their heart rates more steadily.
This skin-to-skin care has been shown to have numerous physiological, physical, emotional and nutritional benefits for the parents and the baby.
Q: What forms of support are typically available to families in the NICU?
A: There are several levels of support for parents during their baby's stay in the NICU. First of all, the medical staff strives to keep the parents informed of their baby's medical status. Bedside chats and conference meetings keep parents involved.
Physicians work hard to communicate as often as possible with parents. The bedside nurse becomes the main contact especially if the nurse becomes a primary nurse (takes care of a single baby as often as they can consistently). Primary nursing provides continuity for parents and a skilled, knowledgeable medical professional who knows the baby and can help parents put the ups and downs of the NICU in perspective.
NICU social workers meet with parents to discuss emotional issues, family concerns, and to provide assistance. A developmental team consists of infant development specialists trained in the behavior of the baby and infant responses to the environment. Direct care providers support parents through behavioral assessments and the creation of individualized family-centered care plans with suggestions and recommendations that involve the parents in daily care and handling of their baby.
Physical and occupational therapists from the developmental team provide expertise in behavior, particularly positioning and movement, as well as feeding.
Q: What about once the baby "graduates" from the NICU?
A: After graduation from the NICU, the primary support for the family is the baby's pediatrician who monitors the baby's medical progress and supports parents to understand the uniqueness of a baby recovering from newborn intensive care and prematurity, or surgery, or specific illness.
The developmental team from the baby's hospital will arrange regular visits to the newborn follow-up clinic for developmental surveillance to keep aware of the baby's progress. If any need arisesa need for speech therapy, for examplethe follow-up team can make appropriate referrals to community or hospital services.
Another professional the family may meet is the public health nurse who comes to the home, often just after discharge, to assist with the baby's transition from to hospital to the home. An infant developmental specialist from the community early intervention services may provide in-home guidance regarding the infant's development.
Q: How can the family's support team prepare the family for the baby's homecoming?
A: Support and guidance is important to address the transition from hospital to home. Parents are taking on full responsibility for the care of their infantsa role they have depended on a professional team from the hospital to do for many weeks and months. Taking on the full role of managing care, sleep, feeding, and medical needs can be overwhelming and stressful for parents. Communicating with the family's pediatrician sets the stage for knowing what to expect medically.
The baby is making a very big transition too! All sounds, visual stimuli, motion, positioning and the entire environment will change suddenly. Babies often react by becoming fussy, taking their feedings irregularly, becoming stressed, crying, being unable to sleep, or changing their sleep and waking cycles, to mention a few. Each baby will react in an individual way.
Preparing parents for these changes while they are in the NICU just before discharge is helpful. The nurses and the developmental team can make recommendations for sleeping and feeding support by calling or visiting the home during the first week after discharge if the parents are willing.
Q: What are some adjustments professionals can prepare parents for as they take their baby home?
A: The primary adjustment for parents and baby is getting to know each other in a different environment and building their relationship. As described above, this can be a series of adjustments for both parent and baby. The preparation that takes place in the NICU before discharge can lay a trusting groundwork, so that the parents don't feel alone and feel that they have resources they can call for questions related to feeding, promoting weight gain in their baby, and managing the infant's behavior.
And sleep. Parents realize that the main concerns in their lives become helping their infant continue to manage sleep, waking, arousals, feeding and getting through the day. Providing parents with an understanding of their baby's unique behavioral needs throughout the NICU is essential for parents to have a strong awareness and connection to their baby when they transition home; this builds confidence in parents as they build and trust their relationship to their baby.
Q: How can professionals help parents build a strong, confident relationship with their baby?
A: One of the most important ways parents can build confidence is to understand their baby's unique behavioral patterns. Knowing how their baby expresses stress (such as by increasing breathing, becoming pale, arching, flailing). Babies have their own unique behavioral repertoires of physiological movement and sleep wake cycles. Understanding the special way their baby tells them about their discomforts, likes, and dislikes helps parents know what their baby is signaling.
Because the behaviors of a former NICU baby are very different than that of a full-term newborn, the support of a highly skilled developmental specialist nurse, educator, psychologist, or therapist plays a critical role in building a parent's knowledge of their own child.
Q: What messages do you encourage professionals give to parents whose baby is now home from the NICU?
A: Tell the parents: