7 Ways to Help Preemie Parents Become Their Baby's Best Advocate

“Would you like to change your daughter’s diaper?” The NICU nurse’s question had a profound effect on me, cutting through my misery and making me feel vaguely like a parent.

Last January, after a very high-risk pregnancy, I experienced a placental abruption, a common but potentially deadly complication. I was only 28 weeks pregnant with identical twins. An emergency cesarean section saved all three of our lives, but our family’s medical journey turned out to be far from over.

Shortly after they were born, my tiny daughters were intubated and put on ventilator support. That is when I began my vigil of watching them through their incubators as they clung to life — feeling utterly useless and incompetent.

If I had thought that previously working for the Saving Newborn Lives program and my familiarity with neonatal public health would help me navigate the NICU, I was quickly disabused of that notion. The jargon of the intensive care staff was wildly unfamiliar to me, and that dissonance felt extremely disempowering.

Every minute or two, a different an alarm sounded indicating a drop in heart rate or oxygen saturation level. Without knowing what these numbers meant, every bell and whistle felt like an emergency. The neonatal nurses cared for my twins in ways I was unqualified to, and I found myself nodding without understanding when the neonatologists talked about blood gases, ventilation rates and atelectasis.

I felt at a complete loss at what role I should play as a parent in this new situation.

But that nurse had given me a mission: diaper duty. Changing a 1-kilo premature baby’s diaper through the holes of an isolette isn’t easy, but I awkwardly managed that first attempt with a little help. As I fastened the tiny micro-preemie diaper tabs, I found myself marveling at my daughter’s tiny wrinkly body bathed in blue light to mitigate her jaundice. Soon, I was eagerly attempting a repeat performance on my other twin daughter.

After that, I waited and watched the strip on their diapers turn from yellow to blue (indicating urine) and I swooped in, ready with a fresh, clean pair. Slowly, my feelings of incompetence and loss of control began to recede.

The months went on and we learned the jargon and rhythm of the NICU. The nurses taught me how to care for a premature child. As we learned more, my husband and I  became empowered to advocate for our twins. And as I gained confidence, I began reaching out to other rookie NICU parents to share what I had learned.

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:

1. 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.

2. 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.

3. 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.

4. Make parents a critical part of the healthcare team. Use language that includes the parents and, when possible, affirm their contributions to the effort, whether it be showing up, providing breastmilk or practicing kangaroo care.

5. 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 the child will be discharged into a safe and informed family environment.

6. 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. For example, knowing that a baby’s carbon dioxide 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.

7. 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 disease 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 is often the case 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.

References:
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.

A version of this post fist appeared on the Healthy Newborn Network.

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Getty image by JBryson