Heroes among us

In January of 2024, Jenn Riley and her husband, Sean, received news no parent ever wants to hear about their child: 7-month-old Maeve had left-coronal craniosynostosis, a rare condition affecting 1 in 2500 babies. In Maeve’s case, it meant that the left side of her skull bone had fused prematurely, and her skull and brain were shifting to the right side where the sutures were still pliable. This would eventually cause deformity of her skull and face and could lead to developmental delays or cognitive issues.

Jenn was terrified and wrapped in denial. Having never heard of this condition, Jenn launched into research mode, spending countless hours reading about parents who had traveled this exact journey before her, learning from their experiences, and realizing just how much she and Sean would need to lean upon their families for strength and support during the months before and following surgery. She joined Facebook support groups and although this condition is considered rare, Jenn soon realized how connected she would become to families who had received the same diagnosis.

“The parents I’ve talked to who were on the other side of this operation were encouraging and honest,” said Jenn. “I can’t say it enough—this community was beyond incredible to us. They willingly shared their stories, letting us know that we were about to experience what would be the worst day/weeks of our lives.  A fellow mom said “This will change you. It will give you a new view on life, empathy, and what really matters.”

All of this research led Jenn to specialists at 5 different hospitals, and ultimately, she found the surgeons that she interviewed for Maeve’s surgery. In August, Jenn, Sean, their son Landon and members of their immediate family traveled from New York to Texas with Maeve for surgery, confident in their choice of a pediatric plastic surgeon and neurosurgeon with a wealth of experience in successfully treating this condition.

Maeve was scheduled to have calvarial vault remodeling or CVR. The 2–3-hour surgery involves a zigzag incision in the skin of the scalp from ear to ear, to allow the surgeon access to the bones of the skull. The misshapen bones protecting the brain are removed and the front of her skull was replaced with the bone from the base of her skull. The surgeon then places the bones back in the correct position, securing them in place with absorbable sutures and the healing journey begins.

Jenn and Sean kept this news to themselves all the while they were researching, learning and connecting with others. Jenn remembers thinking that, one day, these months would become a distant memory for her family. “I’d been faking a happy “GOOD!” every time someone asked me how the baby was doing, while wanting to scream and cry and blurt out our secret. I was angry, I certainly was anxious, I absolutely was scared,” she said, adding “I was heartbroken this was real and part of Maeve’s journey. But I knew there was an option for us to help Meave, and I was determined to do what was needed to get her there.”

“Once we let our friends, family, and colleagues know what we were going through they all rallied,” said Jenn. “This tremendously powerful and positive outpouring made us realize that Maeve and our family are not just special to us but to so many others, too.”

Jenn and Sean’s son Landon was with them on the days leading up to the surgery. He spent 5 hours at the hospital in and out of pre-op appointments, listening to the doctors talk about his baby sister’s surgery, and watching her get measurements and blood taken. At one point, he told the child life specialist exactly what would happen during his sister’s surgery as if he was the one performing it.

“All week he was a pillar of strength, especially for me,” says Jenn. “He saw his sister uncomfortable and not herself and he rose to the occasion, choking back tears and speaking to her like normal, hugging and kissing her as always (but softer), and making sure she knew he was there.” After surgery when Maeve was incredibly swollen and unable to see for multiple days, Landon played with her in the pool, read to her, and played music she loved, distracting his parents from feeling sad or worried. “He’s always been mature and expressive with his emotions beyond his years’ but this was next level. I’ll forever be grateful to him for that. I have to keep reminding myself, he’s 8,” says Jenn.

Jenn acknowledges that she would be nowhere without her village and her family who has gone above and beyond to stretch themselves the thinnest they could, to make sure all were taken care of. She shouts a giant thank you of gratitude to the amazing and generous souls who wrapped her family up in prayers, monetary donations, and so much food and love before and after surgery.

Maeve’s surgery was a success. Doctors assured Jenn and Sean that the real assessment will be when she’s a teenager once they see how she continues to grow into her newly shaped skull. Six weeks post-surgery their surgeon said Maeve was recovering beautifully, looking wonderful, and doing everything she needs to be doing to heal. Swelling would persist for another 3-6 months, at least, but it doesn’t seem to be bothering her, and, in fact, she’s been doing even better than expected being back in her little pink glasses.

With the surgery behind her, Jenn thinks back upon those long months of keeping this secret and being what she considers “a mess.” She is a firm believer that everyone’s mess is their message. Jenn felt it was important to give back to the community that educated her about this condition and inspired her throughout her journey. She spends a few hours each week interacting with families who are at the start of their journeys, with not only emotional counseling and helping set expectations for surgery like others did for her but also sharing her experience with her surgeon and staff in Texas for those considering that option. As part of The Hero Award, CrowdPharm makes a donation to the charity of our hero’s choice in their name. Jenn chose to donate to CranioCareBears.org.

Maeve improves each day. “Our surgeon told us that Maeve is special and has a unique zen to her he doesn’t see in most children, and he’s done over 3,000 of these surgeries!” says Jenn. “Our little warrior continues to exceed all our expectations. She has her spirit back, and big-huge smile, and her hair hides her permanent wavy headband most days. She’s a fighter this one.”