Investing in Social Change

April 15, 2016

Imagine having to decide if you want your baby to receive medical intervention at birth that, while potentially saving their life, could lead to a lifetime of healthcare challenges, developmental delays and disabilities.

Imagine after the baby survived despite tremendous challenges, that you were unable to hold your baby because their underdeveloped skin would tear like wet paper.

Imagine after weeks in the hospital, finally allowing yourself a few hours at home to rest and receiving a phone call from the doctor asking how long it would take you to get back to the hospital because your baby was not expected to live through the night.

Holding-Jackson-kangaroo-care NICU preemie micro preemie

Kelli & Jackson in the NICU in 2000.

Recently Radiolab aired an update of their podcast 23 Weeks 6 Days, the story of award winning journalists Kelly and Tom French’s excruciating NICU journey and the tremendous obstacles their baby girl Juniper had to overcome to survive. As I listened, I found myself crying as Kelly described her realization that her baby had been ripped from her body and the ache she felt to have Juniper back in her womb so she could protect her. Tom’s fears about his ability to bond with such a tiny and sick baby also resonated with me, as I too faced those same fears.

More than a decade ago, my husband and I lived through a very similar nightmare. My micro-preemie, born at 24 weeks and weighing a pound and a half, spent four months in the NICU. Although he survived despite great odds, the dark memories of those traumatic months created a very deep wound.

The scar of watching my son be resuscitated after weeks of fighting for his life in the NICU will never completely heal. There are tiny triggers that spark the movie to play in my mind.

For many years I did not want to admit I suffered from PTSD, but I cannot deny the automatic physical response to certain stimuli. Even now, more than a decade later, the smell of certain brands of hand soap and the tone of some alarms still trigger an automatic response. My heart races, my hands shake and my stomach turns.

This is the reality for more than 500,000 families each year in the U.S. And as technology and medical care continues to advance, the cusp of viability continues to be pushed back, which means more babies are surviving – some as early as 22 weeks. But these babies and their families face long and most likely difficult NICU stays filled with surgeries, medications and therapies that span years and sometimes a lifetime.

Kelli Kelley and Jackson 2015 Hand to Hold Preemie Babies 101 micro preemie

Kelli and Jackson at the Hand to Hold 5th Birthday party in 2015.

Studies now find that NICU parents face their own long lasting challenges, including higher rates of divorce and mental health diagnosis such as anxiety disorders, depression and PTSD. Studies also indicate that these challenges often result in child abuse and neglect.

Recognizing these major social challenges that can have a profound impact on the outcome for the baby and the entire family, the National Perinatal Association is advocating for practice standards in the delivery of psychosocial support for NICU families.

In my February column, I discussed Hand to Hold’s mission to create social change that will ensure the delivery of psychosocial support for NICU families. We understand that by pioneering and championing fundamental changes in the delivery of mental and emotional health during the antepartum period, throughout a NICU stay and after hospital discharge, we help improve outcomes for medically fragile babies and their families.

But social change requires significant investment!

Please donate today. Your investment will provide FREE one-on-one peer mentoring, online support communities, family education and resources. Most importantly, it will give NICU parents the healing knowledge that they are not alone.

Together, we can transform the lives of NICU families which in turn benefits our communities, our economy and most importantly the social and developmental outcomes of babies born preterm or with special health care needs.

Thank you for your support!



Preorder Juniper: The Girl Who Was Born Too Soon, available in September.