Editor's note: The original version of this story had incorrect information about an event planned for Oct. 15.
Caitlin and Creed Smiley’s son, Bentlee, was born in 2019 with a congenital heart defect.
Bentlee needed open-heart surgery and was taken from Mercy in Springfield to St. Louis Children’s Hospital almost immediately after he was born.
“At five days old, they told us they just couldn’t wait any longer,” she continued. “So they pretty much had to cut his heart apart and put it back together so it would pump the correct blood where it needed to go.”
But a day or so before Bentlee’s surgery, the Smileys learned they qualified for services from On Angels Wings (OAW), a Springfield-based nonprofit that provides free photography for families of medically fragile babies and children.
A volunteer photographer visited them in the hospital before Bentlee’s surgery and took family photos — in case that would be their only opportunity.
Some of the Smiley family photos are part of a gallery exhibition featuring the photography work of On Angels’ Wings and sponsored by Hospice Foundation of the Ozarks. The gallery is open to the public at the Pool Art Center at Drury University through Oct. 15, which is Pregnancy and Infant Loss Awareness Day.
On Angels’ Wings volunteers often find themselves photographing a stillbirth or a baby who does not survive very long. In those cases, the photos might be the only tangible thing the parents have to remember their child.
If the child lives, volunteer photographers continue providing annual family photos until age 18.
(More about events happening on Oct. 15 to commemorate Pregnancy and Infant Loss Awareness Day later in the story.)
Bentlee survived open heart surgery
Bentlee’s heart defect is called transposition of great arteries: The top two arteries of his heart were crossed, sending oxygenated blood and deoxygenated blood to the wrong parts of his body and causing his oxygen level to be low.
Bentlee also had a ventricular septal defect — a hole between the ventricles.
The open heart surgery on 5-day-old Brentlee was supposed to take about six hours, Caitlin Smiley recalled. Around that six-hour mark, they were told Bentlee was bleeding out.
“They were doing blood transfusions, trying all that they could,” she said. “They just wanted us to be aware. And we actually did not get another update from them for about four hours.
“We were preparing ourselves for the worst,” she continued. “At 10 and a half hours, they called us and said Bentlee was stable.”
Bentlee survived the surgery. He was in the hospital for nearly four weeks. Around the time he was able to return to the Smiley’s home in Republic, the pandemic hit.
“We were like completely isolated with a baby trying to recover from open heart surgery,” Caitlin Smiley said.
Bentlee will be 3 in December. And though he has some health concerns, including a rare immune deficiency that is linked to his congenital heart disease, he’s doing well, Caitlin Smiley said.
As with any OAW family whose child survives but remains medically fragile, the Smileys will continue to have free family photos made every year until he turns 18.
Caitlin Smiley said they appreciate the precautionary measures volunteers with OAW take around their son. In addition to annual family photos, they also rely on the organization for Easter and Santa photos because they know everything is going to be disinfected and the photographer and Santa will also be following safety precautions.
“We can’t take him to the mall. We can’t take him to Bass Pro. There’s just too many germs out there,” she said. “They’ve provided a safe space for us to still be able to get those experiences with him and not have to miss out on those.”
Team of volunteer photographers grew quickly
On Angels’ Wings was started in 2013 by Michelle Cramer of Springfield. At the time, Cramer had been volunteering for another organization that offered free stillbirth photography.
But Cramer wanted to do more in terms of staying connected with the families and offering more support.
When she started On Angels’ Wings, Cramer was the only volunteer photographer. Over the years, her organization has grown to a network of about 75 volunteer photographers all over the state, able to visit hospitals in Kansas City, St. Louis, Joplin, Columbia, Rolla, Poplar Bluff and Cape Girardeau.
The organization will soon have an OAW chapter in Oklahoma City. In 2023, there will be a chapter in Minneapolis.
A self-described empath, Cramer said she started doing the volunteer photography because she had an “insatiable need” to help families who are experiencing high-risk pregnancies, stillbirths and those with medically fragile babies and children.
“Especially if the baby doesn’t make it, they have nothing tangible really of their child,” she said. “They want to acknowledge that their child existed, that their child mattered, that they loved them.”
Mom says grief recovery therapy helps
Cramer and Michelle Slavens, OAW’s vice president, are both certified in the Grief Recovery Method, an evidence-based approach to helping grievers deal with the pain of emotional loss in any relationship.
On Angels’ Wings offers an 8-week Grief Recovery Therapy in group and individual settings at the nonprofit’s studio in Springfield.
The therapy is not just for parents whose baby or child died. It is also for parents whose child survives, but is now medically fragile and living a life very different from what their parents had wanted for them.
The Smileys completed OAW’s Grief Recovery Therapy last year.
“It’s put us in the best mental space we’ve been in since Bentlee’s diagnosis,” Caitlin Smiley said. “We kind of put off our own mental health for a long time. … It helped our marriage. It helped us as parents, as people.”
The Smileys were initially apprehensive about being part of a grief recovery group with other parents whose child died. After all, their Bentlee survived.
Cramer explained to the Smileys that it didn't matter — they were clearly grieving the loss of the life they dreamed about for their son and themselves.
Bentlee continues to face health challenges, including the possibility of another open-heart surgery and a lifetime of being severely immunocompromised.
“We never thought that this would be the life of our child,” Caitlin Smiley said. “We expected to turn around and take him home after 48 hours to his nursery and change his diapers and do all the things that parents are supposed to do with their kids.
“We didn’t get to change the first diaper. We didn’t get to come home after 48 hours,” she continued. “He didn’t get to wear his coming home outfit like we thought he would. I didn’t get to breastfeed. I didn’t get skin-to-skin because he was so hooked up to wires.
“Our world was completely turned upside down. There were weeks that we didn’t get to hold him,” she said. “And we just didn’t understand why we still felt like we were missing something. We were happy to have Bentlee, but we’re still so sad.”
Caitlin Smiley said she felt so welcomed and accepted at the group therapy sessions, even though most of the attendees’ babies or children had died.
“We formed those connections. We formed those friendships. Those are so special to us — to be supported by so many people,” she said. “They have just supported us through this whole journey.
“I don’t think we would be in such a good spot as we are right now without (On Angels’ Wings) support,” Caitlin Smiley said, “and how much they care about and love our family.”
Child born with no skull is now 5 years old
When Jessica Masterson was 24 weeks pregnant, she and her husband Tom were told that their baby probably wouldn't survive the pregnancy.
Their baby had no skull, the doctors warned the Mastersons. If their child does make it to term, the Mastersons were told he wouldn’t survive the trauma of birth.
And if somehow the child somehow survives birth, the Mastersons wouldn't have much time with him.
Despite those grim warnings, Mastersons never considered terminating the pregnancy.
“We wanted to be able to spend as much time with Owen as possible regardless of the diagnosis we received,” Jessica Masterson explained in an email. “We did not know what life would look like going forward but were determined to enjoy the time we were given with him.
“We prayed for Owen to be healed. We reached out to friends and family to join us,” she wrote. “We also shared our story on social media in order to reach others who might join us in prayer.”
Those doctors were wrong.
Owen is now 5 years old. He has acalvaria, an extremely rare malformation consisting of the absence of skull and facial bones.
Owen has no skull above his eyebrow and ears to protect his brain. When the condition was discovered during an ultrasound at 24 weeks, the doctors were not sure if Owen even had skin covering his brain.
He continues to face many challenges, his mom said. He is very susceptible to respiratory infections. And Owen is not mobile. He needs equipment to be mobile and an adult to transfer him between pieces of equipment (like his wheelchair and bed).
“The fact that Owen is FIVE is amazing! It’s so hard to believe,” Jessica Masterson wrote. “Owen laughs and smiles. He makes vocalizations.
“He’s a very sweet boy and captures the hearts of everyone who meets him,” she wrote. “The fact that we live with a miracle every day is truly amazing. He’s a reminder that miracles still happen and that God is good.”
On Angels’ Wings has been with the Mastersons since they received Owen’s diagnosis. Their photos are also part of the gallery exhibit at Pool Hall
“They continue to follow our family’s journey and provide support,” Jessica Masterson said. “We very much appreciate receiving photos for Owen each year. Every single volunteer for On Angels’ Wings is wonderful.”
Event for Pregnancy and Infant Loss Awareness Day on Oct. 15
On Angels’ Wings is teaming up with The Lost & Found Grief Center, another Springfield non-profit that is focused on assisting grieving families, to host a Wave of Light ceremony in observation of Pregnancy and Infant Loss Awareness Day on Oct. 15.
According to Cramer, an average of one in four families have endured a miscarriage and one in 160 pregnancies end in stillbirth.
“This doesn’t include infants lost to life-limiting medical conditions like Trisomy, Congenital Heart Defects, Congenital Diaphragmatic Hernia, Spinal Muscular Atrophy and many, many more,” Cramer said in a release. “That’s why the entire month of October is designated to honor these heart-crushing losses families endure, why October 15th is designated Pregnancy and Infant Loss Awareness Day, and why we count it a privilege to work with Lost & Found to provide a dedicated event for families to honor these children.”
Wave of Light is an international event. Communities around the globe gather and light candles at 7 p.m. local time in honor of their infant children who have died, creating a “wave of light” across time zones.
The Springfield Wave of Light event is provided at no cost to the community thanks to funding from Hospice Foundation of the Ozarks.
Attendees have the opportunity for their child’s name to be read at the event when they register, at no cost, by Oct. 7 at https://bit.ly/OzarksWOL22 or by scanning this QR code:
Registration is not required to attend, unless attendees would like their child’s name read aloud.
“At Lost & Found Grief Center we understand the importance of taking time to remember our loved ones who have died,” Mike Woody, executive director of Lost & Found, said in the release. “Wave of Light is a unique opportunity for families who have experienced pregnancy and infant loss to gather and remember their loved one together as a community. We look forward to participating in this beautiful evening honoring the lives of those we lost too soon.”
The Wave of Light event will be held at Kellogg Field on Drury Campus (attendees can park in the lots A, 4 and 7 on Summit Avenue). The evening will begin at 6:30 p.m. with a live musical performance from Joe Dillstrom (joedillstrom.com), followed by stories from a few families who have endured such loss, with the candle lighting to commence right at 7 p.m. Following the candle lighting, names will be read. The event is expected to close at 8 p.m.
Additionally, attendees are encouraged to come early and stroll through Pool Art Center on Drury’s campus to view “Celebrating Life & Encouraging Hope,” a stories exhibition by On Angels’ Wings and presented by Hospice Foundation of the Ozarks.
Special hours for the art center on October 15 will be 4:30 to 7 p.m. in anticipation of Wave of Light.
Founder publishes book about grief
Cramer's book “Unshattered Grief” published in June. She wrote the book based on her many years experience supporting grieving families.
Cramer compiled stories from recipients about the many platitudes that were thrown at them while they were grieving that turned out to be more damaging than helpful.
“There’s so much out there about how to grieve, but there’s nothing out there about how to help someone that’s grieving,” Cramer said, “because society just really isn’t good at being there for someone that is in the throes of grief.”
