Mom Finds Voice After Devastating Loss

Son was unexpectedly born 16 weeks early
Niko
Photo by Sebastien Morisot

Our world unraveled when our son was unexpectedly born 16 weeks early, and it collapsed and shattered when we lost him. He died because of complications related to his prematurity. In an instant, our son was gone — but not really. I was determined to make sure he would remain in our lives.

Here is how I learned to advocate for Niko and keep his memory alive.

Advocating for Niko’s health

The neonatal intensive care unit (NICU) is a scary, intense place. It’s easy to become intimidated in the NICU; one can get lost in the medical jargon and the speed with which things can change.

Even though we trusted our providers, we didn’t stay quiet. Nobody knows a child better than the parents. In the hustle and bustle of shift changes and rotating medical staff, the only people who can provide true continuity of care are the parents. We came to learn the special quirks about Niko, and with support and encouragement from our medical team, we learned to speak up. We asked questions. We voiced our concerns and made suggestions to ensure that Niko received the best care possible.

My son is my inspiration, and my daughter is too

Niko passed away in December 2014 after 5.5 months in the NICU. During that time, and in the months and years that followed, I found my voice; for Niko, myself and others.

Less than a year after Niko passed away, I journeyed to the national March of Dimes Prematurity Prevention Conference on World Prematurity Day. Through my grief and pain, I knew that I needed to be there for Niko and for his baby sister, who I was carrying in my belly. I wanted to see if there was anything I could do to help prevent preterm birth, not only for my family, but for all families.

I brought this motivation back to my company, RTI International. I wondered if RTI, a nonprofit research institute, could be a part of the prematurity prevention cause and found out soon after, in some ways, we already were. With Niko and his sister as my inspiration, I was fueled to mobilize RTI to identify ways we could do even more to help overcome prematurity barriers.

From My Babies to All Babies

Today, I actively advocate against preterm births and work to create awareness, both personally and professionally. My hope is that other families will not have to go through the overwhelming experience of a preterm birth, but we have so much to do to better understand and prevent prematurity. In 2016, for the first time in eight years, the preterm birth rate in the U.S. increased.

This is not okay. None of this is okay.

If you agree, then there is something that you can do. Supporting organizations like the March of Dimes, which works to give a fighting chance for all babies, is one way you can help. Each year, the March of Dimes fundraises through its March for Babies Walk & 5K Run events to fund prematurity research and support NICU families.

This year’s Triangle March for Babies takes place on Saturday, April 29, 2017 in Morrisville, North Carolina, with the theme of "Hope, Remember and Celebrate." We have hope that, one day, prematurity will no longer exist. We remember our babies, like Niko, who are gone too soon. We celebrate our achievements, such as the recent research showing that more and more preemies, as young as Niko when he was born, have a greater chance of survival.

Although Niko did not survive, he still matters. It was through Niko that I found my voice. I choose to not be silent — not just for Niko and his baby sister, but for all babies.

Moline is the proud and loving mother of two children, Niko (her angel baby) and Kaia (her rainbow baby). She and her husband, Gautham Pandiyan, are the 2017 Triangle March for Babies Ambassadors.

Categories: Baby, Baby Health, Guest Bloggers