Prematurity Awareness: What It Really Means

November 17, 2016

prematurity awareness, world prematurity day, NICU, Hand to Hold

When Prematurity Awareness Day rolls around each year, I think, “Yes, I am extremely aware of prematurity.” If you’ve delivered a baby prior to its due date, chances are you’re highly aware of it too. Our friends and family are aware. Most people we know are “aware” of it by association. But what does awareness really mean?

Awareness is

  • knowing that something (such as a situation, condition, or problem) exists
  • feeling, experiencing, or noticing something (such as a sound, sensation, or emotion)
  • knowing and understanding what is happening in the world or around you

We know prematurity exists. Many of us here have experienced it first hand. We understand all too well the emotions and repercussions that come with delivering a baby too early. But for those who have not been directly affected, there’s a lot they may not know.

Facts about prematurity

What is a little harder for some to understand is it doesn’t end when you leave the hospital.

  • Parents can experience guilt, depression, and even PTSD for months and years after their NICU journey has ended.
  • Prematurity can result in learning disabilities, behavioral issues, and other long-term problems that cannot be predicted upon discharge.
  • Up to 45 percent of infants weighing less than 3 1/4 pounds at birth have one or more abnormalities on testing at school age (source). Many of Hand to Hold’s “first families,” the ones that came to us when we began providing peer support six years ago, now have school-aged children and are having to navigate the world of testing, 504 accommodations, and Individualized Educational Plans.

Arming yourself with facts is one of the best ways to spread awareness of prematurity. But it’s also important to realize that experiencing prematurity is about so much more than facts.

It’s about emotions and hardships.

It can put some relationships at risk, while strengthening others.

It can bring people together. It can cause friends to drift apart.

It can result in guilt that is carried for years. It can result in successes that can only be described as miracles.

We asked our NICU Family Voices Contributors what they would like people to know about prematurity. Here are their answers.

Prematurity awareness: What we want you to know

ima carnelus headshotYour perspective about life changes. You begin to appreciate things in a whole new way. — Ima Carnelus, mom to Jaxson, born at 22 weeks, 6 days. Jaxson spent 119 days in the NICU.

jessie threlkeld headshotEverybody develops at a different rate, and we have lots of doctors and specialists to help us make sure that our baby develops the way they need to. Please don’t try and “diagnose” or figure out whats “wrong” with our child! — Jessie Threlkeld

danielle dreger headshotIt changes the way you parent. You are always on guard. You are not passive. — Danielle Dreger, a former 30-week preemie herself, and mom to a 27-week micro preemie. Her son Theo spent over 200 days in the NICU.

andrea mullenmeister headshot It doesn’t stop when you leave the NICU. — Andrea Mullenmeister, mom to Jaxson, born at 23 weeks, 3 days. Jaxson spent 93 days in the NICU.

summer hill-vinson headshotYou are never the same person after you fear that you will lose your child. — Summer Hill-Vinson, mom to a 26-weeker and a 29-weeker, who spent a combined 150 days in the NICU.

karee marshIt’s painful even years later. The fact that [your baby] is completely healthy and hasn’t had an issue since leaving NICU doesn’t negate what happened, and it doesn’t negate what very well could have happened. – Karee Marsh, mom to 26-weeker who spent 103 days in the NICU.

71There’s no rhyme or reason why it happens. — Eric Ruthford, father to a 22 week, 6 day micro preemie, who set a record for most immature survivor to come out of his NICU, the busiest one in the state of Washington.

75The greatest advice I was given was “three steps forward, two steps back” in our prematurity journey. I never believed in the darkness that one day my son would be healthy and active. I never believed he’d start kindergarten. He’s in 1st grade. It really does get easier. — Katie Reginato Cascamo, mom to a 30-weeker who spent 56 days in the NICU.

Prematurity awareness is so much more than simply knowing that 1 out of 10 babies is born preterm. It’s understanding that prematurity often occurs with no known cause. It’s advocating for prenatal and maternal healthcare for those who need it to prevent the preventable preterm births. It’s understanding that although a baby is deemed healthy enough to come home, he or she still has many challenges to face. It’s realizing that entire families are affected, for years to come.

We’re out of the woods; we just never know what’s around the corner. — Kelley Benham French, author of Juniper: The Girl Who Was Born Too Soon

Thank you to all who support Hand to Hold in our mission to provide comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs, and those who have experienced a loss due to these or other complications. Because of you, we are able to continue our work of not only raising awareness of prematurity, but all that comes with it.