As we close out the month of September, which is Neonatal Intensive Care Unit (NICU) Awareness Month, we reflect on what it means for both parents and healthcare providers to experience a NICU stay. To shed light on these journeys, Cathy Jackson, Senior Director of Advocacy sat down for a virtual chat with Kelli Kelley, Hand to Hold Founder and CEO and Dr. Mitchell Goldstein, Neonatologist, Loma Linda University Health. Here’s what they had to share…
Why are you passionate about the work you do for NICU patients and families?
Dr. Goldstein: I’ve been a neonatologist for 26 years, and it’s a very unique medical field because you are working with the most fragile, vulnerable patient population. These NICU babies need an advocate so they can have the opportunity to live a whole life, and that inspires me to be their advocate. With new research, data and technology – frontiers I couldn’t have dreamed of when I first started my education – we are able to make a greater impact for our patients and their families.
Kelli Kelley: Dr. Goldstein makes a great point about the advances in this field. My son, who is now 20 years old, was born at 24 weeks, the cusp of viability at the time, so we have come a long way. My NICU experience then, along with a second NICU stay with my daughter born at 34 weeks, was overwhelming, lonely and isolating. I was lucky to have both of my children eventually come home with us, but the whole experience is still emotional to talk about, even right now, which is really what inspired me to start Hand to Hold. Hand to Hold helps families before, during and after a NICU stay or an infant loss, by providing resources and pairing moms, dads and families with mentors who have gone through a similar experience.
What are the challenges related to the NICU?
Kelli Kelley: As I just touched on, one of the biggest challenges I experienced, and have now witnessed, is the mental and emotional impact of a NICU stay. No one can prepare you for what you’ll feel and what follows – the challenges don’t stop once you’re home either. Mothers with babies in the NICU are up to 70% more likely to experience postpartum depression (PPD), compared with mothers whose babies don’t have a NICU stay.[i] African American mothers have at least twice the rate of preterm birth compared to Caucasian mothers, as well as the overall greatest risk of preterm birth.[i]
Dr. Goldstein: As Kelli just discussed, no matter the length or the experience of the NICU stay, there are high levels of stress and emotions for the family. It’s important to recognize that babies in the NICU have their own specific needs and NICU stays are dependent on each baby’s circumstance – some stay 10 to 12 days, others over 20 days. It really depends on their unique situation. Late pre-term babies, in particular, still need attention by physicians. These babies are born between 34 – 37 weeks, and although they may be bigger in weight and seem healthy, it’s important to have them evaluated by a neonatologist to check for respiratory stress due to lack of lung development, before they are sent home.
What are the changes that parents and caregivers of babies in the NICU are having to deal with due to COVID-19?
Dr. Goldstein: COVID-19 continues to cause challenges for everyone in different ways – from the staff needing to quarantine from loved ones, to interrupted workflow and the separation of families from their babies. What we want families to understand is that their babies are immunocompromised, and we need to take precautions to safely reunite them.
Kelli Kelley: Being in the NICU is already an isolating experience for families, so with visitation changes due to COVID-19, an already traumatic experience is elevated. Families, and especially mothers, need to prioritize their mental and emotional health to minimize their anxiety. It’s a hard thing to do, but an important step to remember as a new parent navigating the NICU in a pandemic.
What advice and/or resources can you share for parents?
Kelli Kelley: Celebrating the milestones that correlate with a NICU stay – first hold, diaper change, bath, etc. – is really important for families as it helps lighten the experience. We work with hospitals to encourage these types of celebrations through our #H2HMilestones program where parents receive a necklace and beads that correlate with each of their baby’s NICU milestones. Hand to Hold also offers various podcasts, blog posts, private Facebook communities and virtual peer-to-peer support groups to help family members feel part of a community.
Dr. Goldstein: That’s wonderful, Kelli, and so important to celebrate those milestones. I also want to emphasize, from a professional’s standpoint, that everything we do is in the best and safest interest for mom and baby. We understand there is a huge emotional impact, but our ultimate goal is to reunite a healthy baby with their family. The best thing you can do is talk to your baby’s care team about what resources are available. NICU teams are trained to talk to parents about their newborns’ conditions and treatments, and Mallinckrodt makes NICU Parent Education Resources available for hospitals to share with families.
If you or someone you know has had a baby in the NICU, please visit handtohold.org to find support or learn how you can help.
Mallinckrodt is focused on improving the lives of underserved patients with severe and critical conditions, including pulmonary hypertension affecting late pre-term neonate patients. Learning about the experiences of families, healthcare professionals and patients who have a journey in and out of the NICU, inspires us to continue our efforts in improving treatment options for these patients and expand the impact of our work.
[i] Tahirkheli NN, Cherry AS, Tackett AP, McCaffree MA, Gillaspy SR. Postpartum depression on the neonatal intensive care unit: current perspectives. Int J Women’s Health. 2014; 6:975-987.