Research has shown that when parents show up and are involved, their premature and medically fragile babies have better developmental outcomes.1 But there is much that neonatal caregivers can do to help parents transition into their role as parent advocates:
- Include parents in routine care (diapers, oral care) and “firsts” (bottle feedings) to help them bond with their babies and feel like they have an important role to play.
- If your hospital offers primary nurses or physicians, make sure your parents know this is available. Our primaries’ dedication to our daughters made such an enormous difference in the level of care they received – but we were not initially aware we could request primary caregivers.
- Trust a parent’s intuition. If a parent expresses a concern about a change in their baby, address it seriously. Since they see their child day in and day out, they might have picked up something that even a sharp clinician would miss.
- Make parents a critical part of the health care team. Use language that includes the parents and, where possible, affirm their contributions to the effort, whether it be showing up, providing breastmilk, or practicing kangaroo care.
- Include fathers. In the NICU, it may be tempting to focus on communicating solely with the mother, but this is a mistake. By including fathers in caregiving and medical meetings, you are helping ensure that the child will be discharged into a safe and informed family environment.
- When discussing numbers, take the time to provide context. Use new information as an opportunity to teach parents about what their child is going through. Or example, knowing that a baby’s C02 on her last blood gas was 53 is only useful if I understand the normal range and the baby’s trends over the last few days.
- Promote ownership of the child’s space. Even in crowded NICU settings, the crib area can be used as an advocacy space where parents can post signs about their child’s preferences, allergies, or other important messages. Give families the freedom to use this space to improve their child’s life in small ways.
Ten months after my first diaper change, one of my twins is home and thriving, and the other will be discharged in the coming months. (Because of her congenital heart defect she has had a significantly longer hospitalization.) They have septupled in size, transformed from little weaklings to smiling, chubby babies with their own unique personalities and preferences.
Our road to parenthood has been bumpy at best. As so often with premature and medically fragile babies, our medical concerns do not end with NICU discharge. Due to chronic lung disease of prematurity, we will have years to go before both of our children will be completely weaned off respiratory support.
However, thanks to the help of the neonatal nurses, neonatologists, and respiratory therapists we’ve worked with over the past year, I feel fully equipped to ask questions, navigate the healthcare system, and, when necessary, voice my concerns.
And it all began with that simple diaper change.
1. Reynolds, et. al. “Parental Presence and Holding in the Neonatal Intensive Care Unit and Associations with Early Neurobehavior.” Journal of Perinatology. 2013 Aug; 33(8): 636–641.