A word from Preemie Parent Alliance's Keira Sorrells: I usually like to remain in control. I like to plan ahead and I love having a schedule. Nothing gives me more satisfaction than making a list and then taking my dark brown sharpie and marking through one of my tasks. When half my list is done, it's time to start a new list on a fresh, clean piece of paper. Control. Having a plan and a purpose. It really is just an illusion though, false security. Any parent of a preemie or parent who has lost a child will tell you that and yet we may find ourselves grasping desperately for something to give us that security back, that sense of purpose. While we may have once seen our lives laid out before us, after the trauma of loss or an extremely early birth, the future turns from high definition to fuzzy and unfocused. How do we get life back into focus? How do we find ourselves in a place where we can once again feel secure and grounded?
My triplet daughter Zoe died four and half years ago, she was 14 months old and had fought numerous battles after she and her sisters were born 15 weeks early. She faced surgeries and procedures, medications and ventilators, hearing loss and oral aversions, therapists and specialists. If you read a list of most common challenges faced by a micropreemie, she probably faced 90% of them. Ultimately, she succumbed to a secondary infection contracted during a rehospitalization for flu and pneumonia. I miss her every single day. I hate that I don't get to see her green eyes and wide smile every morning. But I have Zoe and my surviving daughters, Avery and Lily, to thank for inspiring me to move forward and find my purpose again.
I've immersed myself in the world of Maternal and Child Health as an advocate for parents of preemies and medically fragile babies, and have been touched by stories of tragedy and triumph that no screenwriter could ever conjure for a movie only true life writes stories like these. And I've seen how important the healthcare setting is to the emotional well-being of the parents and their ability to feel confident in caring for their child once they leave the bubble of the NICU. What shocks me is how difficult it can be to get the proper kind of peer support and resources for the parents who desperately need them. Even when the NICU staff is on board and doing everything they can with their limited resources, time and time again parents miss out on easy opportunities to bond with and care for their babies.
Thankfully, I am not the only parent who has been inspired after surviving the death and/or premature birth of their child. I am honored and privileged to lead the newly formed Preemie Parent Alliance, which is a network of support organizations; each led by a passionate, professional parent. Our members follow the continuum of care for a family beginning with high-risk pregnancy and bed rest support, through the NICU and life after the NICU. We also have members with a specific focus on bereavement support or support for fathers and siblings. With all the gaps yet to be filled and bridges yet to be fortified between parents and providers, we have begun to build a strong foundation of respected parent leaders. We have started to create a collective voice for this population of families who need someone to speak for them while they are immersed in the turmoil of parenting a baby facing an uncertain future.
This is very personal to each of us, we were once in these very situations, we understand, have walked the halls of a NICU, sat for hours on end next to an isolette, and now we want to help facilitate positive change. We want every parent of a preemie to feel empowered and supported to know that they are not alone. Each of us can point to a moment when we found our ray of hope along our journey and we want nothing more than to provide that to all parents of preemies.