Kelli Kelley’s story of how she created Hand to Hold begins on Aug. 7, 2000. That was the day her son, Jackson, came into the world at 1 ½ pounds and 24 weeks gestation.
"They talk about your life changing in an instant. It really did," says Kelley, 44.
It was that instant that sparked Hand to Hold, which supports and provides resources to families of children born prematurely or with special health care needs or who have lost a baby because of these reasons.
Kelley and her husband, Michael, were expecting their first baby. They had picked out a crib, but they hadn’t taken a birthing class or registered for shower gifts. On that August day, she was driving home from work and felt a pain, followed by more pains.
She told Michael that she thought something was wrong. That she felt sick.
Kelley got an ambulance ride to the hospital just to have someone check her out, while Michael followed in the car. He knew something was wrong when the lights of the ambulance came on during the drive to St. David’s Medical Center.
She feared what was happening to her and also what was happening to the baby. Her due date had changed several times, and she didn’t know that babies born at 24 weeks could survive.
She remembers a team of people in the operating room. All she could think was, "I have to call the insurance company" and "Don’t cut my pants off." She had borrowed the pants from a friend.
Jackson was born at 7:33 p.m. by emergency cesarean section.
When she woke up from the surgery, Kelley was confused. She was told the baby was in the neonatal intensive care unit, but not much else. She had staples down her stomach.
Someone had attached a Polaroid picture of Jackson to her bedside. She didn’t really want to look at it, and she felt guilty about that.
"I kept apologizing to my husband over and over again," she says. She wondered if she had eaten something, done something. She is one of the 50 percent of women who give birth to preterm babies who have no idea why their babies came early.
At 3 a.m., she was able to be wheeled into the NICU to visit Jackson. She didn’t want to go, but her mother, who had arrived from East Texas in record time, encouraged her. "He needs to hear your voice. You need to see him," Kelley remembers her mother saying.
She had no idea what a NICU would look like, but she saw three bays with a total of 30 or 40 babies. Then she saw Jackson. He was in an open bed with plastic wrap over it to help retain heat. She stared at him and looked for features that looked like her or her husband. She couldn’t find any. She remembers having a lack of emotion toward him. "What kind of a life will this baby have?" she wondered.
A doctor talked to her about outcomes, possible brain bleeds, blindness, deafness, mental development challenges, cerebral palsy. She felt sick. "I can’t be in here," she remembers thinking. Her husband went into business mode, making the decisions that needed to be made.
In those early weeks in the NICU, Kelley says she felt incredibly guilty that her maternal instincts didn’t kick in. She now says she was experiencing anticipatory grief, the fear of loving him because he might die.
She also felt incredibly alone. No one could understand her fears, her anxiety, her depression and what years later would become post-traumatic stress.
She didn’t feel an attachment until six weeks later when she could finally hold Jackson. Once she did, she says she remembers thinking: "OK, what’s it going to take? You can mother this child. … We will figure it out."
He stayed in the NICU four months.
"I’ve never told the story without crying," she says. "And it’s 14 years ago. The wound is so deep, it was so traumatic."
The NICU again
Jackson, like many preemies, had multiple doctor appointments and therapy sessions. It became impossible to work full time. She decided to stay at home, and she and Michael decided that because she was at home, it would be a good time to have another baby.
She saw specialists and was assured that she would carry her second baby to term. But Lauren arrived on March 11, 2003, at 34 weeks. While she looked really good and like a baby, Lauren had a blood disorder and needed to stay in the NICU.
"I left without a baby again," Kelley says.
It reopened the wound. "It’s such a deep wound. It changed me at my core," she says. "I wanted to help other people."
She got involved in March of Dimes and even served on its local board and the national parent advisory council. Through March of Dimes, she connected with families all over the country who expressed a need for more support services and information while in the NICU. She began to look at other peer-to-peer support systems used with other health issues to see if they could be adapted.
By 2008, she was working with St. David’s to figure out how to give families a better NICU experience by providing information they needed, helping hospitals make the NICU a more family-friendly place and providing emotional support while in the NICU and after. She also wanted to help families who lost premature babies.
Turning an idea that she was passionate about into a sustainable nonprofit organization would be much more difficult than she imagined. "I’m glad I went into it naive," she says, because she fears she might have given up if she had really known.
"All things in my life have led me to Hand to Hold."
Kelli Dudley grew up in Henderson on a farm with horses, chickens and cattle. Her father was a highway patrolman and then a timber broker. Her mom worked as a legal secretary and then they owned a retail garden center.
Her sister, Kasie, was born when she was 9 years old. "She didn’t have a big sister, she had a second mom," Kelley says.
After high school, Kelley left the small town behind and came to the University of Texas to get a degree in journalism with a focus on public relations.
Right out of college in 1993, she started working for the Arc of the Capital Area. "I really enjoyed cutting my teeth in nonprofit," she says.
She met Michael Kelley when she and a friend took a trip to a resort in Cozumel and he was there with one of his friends. They were some of the only noncouples at the resort. So they had dinner together.
"Our lives mirrored each other so much," she says. While he was from Michigan, they shared the same values and were both close to their families, including their sisters.
He had all the qualities she wanted. By that fall, he was coming to Austin to look for a job. They were married in 1996.
After Arc, she stayed in the nonprofit world and worked in development at the Mental Health Association of Texas. One of her early mentors told her, "I see you as an executive director one day." But, she says, "That’s not what I wanted."
She left the mental health association to work in for-profit at Cunningham Communications. She planned marketing campaigns for the high-tech businesses that were flooding Austin in the late 1990s. While at Cunningham, she also was in on conversations as the Lance Armstrong Foundation was beginning to define itself as a foundation dedicated to survivorship and supporting survivors. Years later, that would be Hand to Hold’s path as well.
"God was prepping me," she now says about her career before motherhood.
From idea to reality
Hand to Hold had a meeting with St. David’s in 2008, but starts and stops followed; it wasn’t official until it got its 501c3 nonprofit status in 2010. Kelley knew what she wanted and she was driven, but she didn’t really know how to go about it or fund it.
In July 2009, David Alter, a private equity investor at Austin Ventures, and his wife, Allie, had twin girls born at 23 weeks. Reese died shortly after birth. Jada survived and spent 4 ½ months in the NICU.
Alter was introduced to Kelley in November 2009 by Dr. David Breed, a neonatologist at St. David’s North Austin Medical Center. Breed had mentioned one evening that Kelley was trying to start an organization to support NICU parents, and Alter was looking for an opportunity to honor Reese’s life and Jada’s fighting spirit.
In early 2010, Alter co-founded Hand to Hold with Kelley by providing the initial seed capital, offering business solutions and connecting Kelley to funding sources.
"She’s passionate about the cause," Alter says of Kelley. "Helping NICU families is her life’s passion."
One of Kelley’s gifts is that she’s not afraid to ask for what she needs. That meant getting funding from St. David’s, St. David’s Foundation and the Aragona Family Foundation initially to launch Hand to Hold.
Angela Wright has been friends with Kelley since they both worked at Cunningham, and she now works as the operations manager at Hand to Hold. She would hear about Kelley’s idea of starting Hand to Hold in bits and pieces, but it wasn’t until Kelley hired the first employee, a family support navigator, that Wright understood that this was happening. "All of the sudden she had an organization," Wright says.
Wright went to work for Hand to Hold in 2011, and it has been an eye-opening experience. Even though Wright was there shortly after Jackson was born and she brought the family food, she had no concept of what Kelley went through or how isolated she felt. "It wasn’t until after I heard her tell her story that I understood what she went through," Wright said. "I had no idea."
Hand to Hold, five years later
Hand to Hold has grown as an organization with 10 employees and an intern. Eight of the employees are parents of preterm children. Its website had 250,000 unique visitors last year. Its preemiebabies101.com blog receives 16,500 unique visits each month. Its Life After NICU online parent support forum now has 16,682 fans. And its Facebook pages have more than 30,000 followers.
It has 100 volunteers trained to be peer-to-peer mentors, with another 90 being trained. Last year, 800 people from around the country asked for peer support and information. Mentors are matched up to families based on the circumstances of the children’s births, not based on geography.
Hand to Hold also has staff visiting families at St. David’s and St. David’s North Austin. That’s where Jamie Cowan first met Hand to Hold Family Support Navigator Jennifer Beatty. Cowan went into the hospital at 30 weeks pregnant and had her daughter, Olivia, 4 ½ weeks later. "They listened to me," Cowan says. "They always left me with information. They were providing support, but also being a friend." Olivia is now 15 weeks and doing well at home.
Last year, Hand to Hold created an NICU Graduate Handbook for parents, which includes a diploma. While the diploma marks a monumental day, Kelley says that life with a premature baby is very different than taking home a full-term baby. You can’t just take the baby to the grocery store or have play groups. It can be very isolating, where adult interaction consists of talking to medical providers and their office staff. Parents also can live in fear of a return trip to the hospital.
Even though her children are now 14 and 11 and healthy, Kelley still contemplates how much of who they are today is because of their early births.
A lot of Kelley’s work as executive director gets done waiting in the car to take children to and from appointments. She keeps lists in a notebook and prints out papers to look over. Her smartphone keeps her on track. Her family often fusses at her to turn off the phone and let it go for the day.
But five years is an important marker for premature children and for Hand to Hold, and Kelley wants it to continue long after she’s able to do the daily work.
"We’ve achieved a path of credibility," Kelley says. "Hospitals are seeing us a leader."
One day, she hopes Lauren and Jackson will play a role. For the next five years, she wants Hand to Hold to expand its reach by serving more families and hospitals. That means expanding its fundraising. Last November, it held its first baby shower event, which raised $107,000.
Kelley also wants to continue consulting medical organizations on NICU and premature baby guidelines. Next week, she’ll present at the Neo: the Conference for Neonatology, and in October she’ll be speaking at the National Association of Neonatal Nurses conference.
But for her, it all comes down to helping families better cope with the trauma of having a premature baby. She doesn’t want another woman feeling isolated like she did. She wants them to know there are help and resources for them, and that depression and PTSD are not uncommon. They shouldn’t feel ashamed or embarrassed about asking for help. She wants Hand to Hold to help hospitals effectively implement initiatives that lessen the emotional impact of an NICU stay so that parents are better prepared to meet the needs of their medically fragile babies long term.
"The success of the organization, that comes down to the persistence of one person — Kelli," Alter says. "She doesn’t take no for an answer."