Heather Wilson loved being pregnant and was excited to meet her baby girl.
It was her first pregnancy, and although there were bouts of morning, afternoon and night sickness and a diagnosis of preeclampsia — a serious condition characterized by high blood pressure and protein in the urine — she and her baby were receiving good care and being monitored very closely.
But, in her 35th week of pregnancy and only two days after tests showed everything was normal, Wilson felt like something was wrong. Her typically active baby had stopped moving. Concerned, she immediately called her husband Demitri, who reassured her that everything was fine but quickly left work to check on her. When even his voice didn’t prompt any tiny kicks or turns, they called the doctor and were told to go straight to the hospital.
There, the Virginia Beach couple received the news that no parent wants to hear. Their daughter — Kennedy Milan Wilson — had passed away.
The loss of their daughter on Aug. 17, 2009, from placenta abruption was unexpected, and the grief overwhelming. When it came time to talk about burial plans and next steps, the Wilsons felt lost. Even finding an appropriate burial gown for their 5-pound. daughter proved to be a difficult task.
“I was sick from the preeclampsia, so I couldn’t leave the hospital. But my mom and husband went out to find a burial gown, and there just wasn’t anything small enough to bury her in,” Heather Wilson said.
This moment stayed with Wilson for several years as she processed her grief. In December 2010, she gave birth to Ryleigh Milan — their rainbow baby — and life and grief kept moving on.
In 2016, she was still thinking about that moment when her husband and mom couldn’t find a burial gown, when an idea came to her.
“I took my wedding gown out of the closet and asked my husband if he cared if I cut this up because I wanted to make gowns for babies, and he was like, ‘Gladly, because all it does is sit in the closet.’ And that’s what I did,” Wilson explained. “And when I posted it on Facebook, people just all around were like, ‘This is amazing’ and ‘We need more of these,’ and then nurses reached out and were asking for them in bulk.
“And that was the start of my journey.”
By “journey,” Heather Wilson is referring to her nonprofit Kennedy’s Angel Gowns. Born from the hope that other grieving families wouldn’t have to face the same challenge hers did, Kennedy’s Angel Gowns was created with the purpose of providing bereaved families free infant burial gowns sewn from donated wedding dresses.
In the nonprofit’s first full year in 2017, she, along with help from volunteers, sewed and delivered 300 burial outfits across Hampton Roads.
“For me it’s about making sure that anyone who’s walked through the situation that I had to walk through doesn’t feel alone, feels supported and has everything they need to walk on a new journey and face a new normal of what their life will look like after losing a child,” Wilson said. “And it also lets Kennedy’s legacy live on.”
Since its inception, Wilson has grown Kennedy’s Angel Gowns to include even more services for families, such as access to free doulas, free doula training and funeral grants, along with a comprehensive website full of resources including support groups and suggested reading material. Through fundraisers and donations, the organization has raised enough money over the years to open the first bereavement room — the Butterfly Room — at Sentara Norfolk General Hospital and equip a dozen local and out-of-state hospitals with infant cooling devices.
These devices, which cost around $5,000 each and carry names such as CuddleCot and Caring Cradle, cool a baby who has passed, giving parents the ability to spend more time with their child while they are in the hospital.
In Hampton Roads, these devices can be found at Sentara Norfolk General Hospital, Sentara Leigh Hospital, Sentara Williamsburg Regional Medical Center, Sentara Princess Anne Hospital, Naval Medical Center Portsmouth, Sentara Careplex Hospital and Sentara Obici Hospital. They’ve also donated cooling devices to hospitals in North Carolina, Atlanta and Rhode Island.
Last month, Kennedy’s Angel Gowns donated a Cenotaph Bereavement Cooling Cradle to Sentara Williamsburg.
The Cenotaph, designed by an Amish craftsman, is a wooden bassinet that can be wheeled into the family’s room or whichever environment they feel most comfortable in, explained Donna Wilmoth, the hospital’s vice president and chief nursing officer.
Wilmoth said this was the second donation Sentara Williamsburg has received from Kennedy’s Angel Gowns.
“It is a great cause,” Wilmoth said. “By having this device, it allows the parent more time with their infant that has passed. Although it’s a rarity and doesn’t happen here every day, it’s important to us as clinicians and to us a community hospital to make sure we have the resources available to support the family as they go through the grieving process.”
Sentara Williamsburg’s cradle was dedicated to Kennedy and to Omega Wells, a little boy who passed last December, four weeks after his birth, due to a congenital condition called trisomy 13.
His parents, London and Tarina Wells of Newport News, attended the dedication.
Tarina Wells said that like Heather, navigating life after the loss of her baby and trying to determine how to handle the burial was overwhelming.
“My son had just passed away and we didn’t have a Social Security number for him, much less insurance, and now we have to bury our baby,” she recalled. “I was looking for different resources and just trying to figure out what to do, period.”
Wells and Wilson connected, and Wells found a new community to help her and her family through. It even inspired her to create her own nonprofit — Omega’s Fight — to provide resources and support for families with a baby in the neonatal intensive care unit, or NICU, as well as months after, whether they are discharged or pass away.
“I think people try to provide support, but without going through it, it’s impossible to know what’s needed,” Wells said. “So, it’s important for the ones like us who have gone through it to speak up and advocate for each other and for the ones who are coming behind us. It’s just a whole other world you don’t know exists until you are in it.
“Just the work that Heather is doing — she inspired me,” she continued. “This is something that still hurts her but also fuels her to be an advocate for others, and that’s the exact same feeling that I have.”
As Kennedy’s Angel Gowns continues its mission, Heather Wilson is hopeful for the future.
“It is our goal to have a cooling device in every hospital where there’s a birthing person.”
To learn more or to help
At the time, Kennedy’s Angel Gowns is not in need of wedding gown donations, but direct donations or support through their fundraisers is needed to help with the mission of creating more bereavement rooms and putting additional cooling devices into hospitals.
The nonprofit’s annual 5K Angel Run for pregnancy and infant loss awareness will be held on Oct. 19 at Virginia Wesleyan University. To register, volunteer or sign up to be a sponsor, visit kennedysangelgowns.org.
Amy McCluskey, amccluskey79@gmail.com
