Not Alone: Serving the Emotional Side for NICU Parents

by Sherida Mock

In the summer of 2000, Kelli Kelley was 24 weeks pregnant when she went into labor driving home from work. That unexpected premature birth of her son launched Kelley on a journey that led her to found Hand to Hold, a nonprofit that provides support for families with babies in the neonatal intensive care unit (NICU). Hand to Hold celebrates its 5th anniversary this month.

af Tell us about your NICU experience.

My son Jackson was born at 24 weeks. He was a pound and a half. He had a 4-month NICU stay. My daughter Lauren was born at 34 weeks. She had a blood disorder, and so she also had a NICU stay.

The March of Dimes has done a phenomenal job of raising awareness about prematurity. I reached out to them, and we became an ambassador family.

af How did that turn into founding Hand to Hold?

Through the March of Dimes, I began to meet other families saying similar things about anxiety and depression. While our babies got phenomenal care in the NICU, no one was addressing our emotional needs.

The NICU experience is traumatic. You’re seeing your baby fight to survive. All your efforts and energy are focused on that baby. You’re not really processing the emotional impact. We know now that moms who experience traumatic birth or premature birth are at a higher risk for having post-partum depression, acute anxiety and post-traumatic stress.

It’s an isolating experience traditionally navigated alone. We want to give you a hand to hold, to prepare you for what you might expect and provide support and reassurance. We also want to support those who do not have the perfect ending, those who lose a baby.

af What does Hand to Hold offer?

The foundation of Hand to Hold is a peer-to-peer support network. What differentiates our program is that we try to match you with a mentor with a similar birth experience. The support is much more effective when you can relate to what that family’s going through.

Our social workers are also NICU graduate parents. They’re following up with not only the parent who’s receiving support, but also the volunteer to make sure it’s an effective match.

We do ongoing education online on everything from the impact on marriage and siblings to preparing for kindergarten. We have activity books that we give hospitals for siblings. We also have a video tour of the NICU, narrated by a NICU graduate.

We have a huge online community. Our parent blog, Preemie Babies 101, has 30-something thousand followers a month. Life After NICU is our online forum. We have more than 19,000 parents who participate.

Hospitals are using our resources and materials. They’re asking us to act as consultants to them on their family centered care models.

Here in Austin, we work in the NICU in partnership with St. David’s Hospital. We’re at the bedside, helping families get the resources they need. We’re talking to them about things that other medical staff may not have time to talk to them about: What’s going on at home? Do they have to go back to work? Are there older siblings?

There are so many challenges on families. It’s emotionally, physically and financially exhausting.

af Do those challenges affect the baby?

We’re spending billions of dollars to save these babies, but we’re sending them into situations that are not optimal to ensure their best outcomes. Our families are at a higher risk for separation, divorce and child neglect.

These babies are also harder to take care of. Often, they are medically fragile. They’re on many different medications. Many can’t go into a daycare setting, so one of the parents has to leave their job and stay home.

It’s a financial strain. Many medical interventions are not covered by insurance. Some of the shots and preventative things that our children take are astronomically expensive. Our families are struggling to afford occupational, speech and physical therapy.

af What message do you have for medical staff?

Understand the impact on the baby—physically, developmentally—if we don’t provide support systems for that family. Understand their power to dramatically change these outcomes, not just by treating the baby in the NICU with the best, most advanced neonatal care.

What’s lacking, but what I see huge steps toward, is not just lip service to family centered care. It goes beyond just putting some brochures out. It has to go much deeper, to truly educate the medical staff about what these families are going through and arm them with the resources they need.

af What message do you have for parents?

Understand their risk for depression and anxiety. I didn’t want to visit my baby at first. I did not feel bonded with him. I felt a lot of shame over that. Later, I learned that’s very normal, that you resist bonding because you’re afraid you’re going to lose them. Understand that they’re not alone. There are so many HIPAA regulations; you’re not supposed to even look at another parent in the NICU. A peer mentor can give them hope and inspiration.

af How are your children doing now?

We definitely have a happy ending. My daughter is 12. She plays club volleyball and does well in school. She’s starting to babysit, and she’s very artistic. We’re really proud of her.

My son is 15 and just signed up for driver’s education. He plays sports, and he’s done very well in school. There have been challenges. He’s had a lot of occupational, physical and speech therapy. He still sees a lot of doctors, but he’s surpassed all of our expectations. We’ve been blessed.

Hand to Hold can help you if you are: