The moment this mom saw the power of children’s hospitals
It looked like a plum cut in half and placed under the skin. It was likely just a fatty spot that would flatten out over time. Then it wasn’t.
“It” was a lipomyelomeningocele, a birth defect affecting a child’s backbone. The mass stretches and pulls on the spinal cord which can then lead to paralysis. Sammy’s lipomyelomeningocele was on her lower spine. Doctors prepared Sammy’s mother, Jozann, that she may never walk nor learn to be potty trained, among a host of other issues.
Within a week of the diagnosis at CHOC Children’s, doctors scheduled Sammy for surgery. Given the delicate nature of the surgery, doctors recommend babies be at least four months old before undergoing this procedure. Sammy’s surgery was scheduled to happen the day she turned four months old. The surgery was successful, but Jozann described that day as the longest day of her life. When Sammy came out of surgery Jozann was afraid to touch her or go near her.
“I just remember seeing her right after surgery with her eyes dilated and her face filled with fluid (because she’d been on her stomach for the surgery) and she just looked like an alien,” Jozann said. “The sound that came out of her is something I don’t ever want to remember…it was deep and guttural.”
Unfortunately, Sammy’s battle wasn’t over. Three months later on Christmas Eve Sammy developed a high fever and was inconsolable. Jozann rushed her to the local emergency room, and it was then she realized how different a children’s hospital and adult hospital really are. That ER didn’t have proper tools and equipment to treat an infant, so they asked CHOC to send someone to help.
“When the CHOC nurse came into the room I think I saw smoke come out of her ears,” Jozann remembered. “The ER staff had been trying to use an adult catheter on Sammy, and couldn’t understand why it wouldn’t go in and why she kept screaming.”
The CHOC team worked quickly and got Sammy in an ambulance to CHOC right away. Fearing spinal meningitis, Sammy’s physician, Doctor Loudon, left his holiday plans behind and headed straight to the hospital. Dr. Loudon determined it wasn’t spinal meningitis, but another potentially fatal condition called urinary reflux. Thankfully, medication and check-ups were all that was needed to treat the condition over the next year.
Jozann, a regional sales executive for CUNA Mutual Group, admits to not being as committed to fundraising for CMN Hospitals until Sammy’s experience. But now she’s among the most passionate of advocates. Both CUNA Mutual Group and CHOC Children’s supported her personally throughout their entire ordeal with Sammy. CUNA Mutual Group allowed Jozann to connect with work when she could, and CHOC provided private areas for her to work.
“I was drained and overwhelmed, so having the ability to stay engaged professionally really helped me cope emotionally. I was so grateful that CHOC thought about how parents need a sense of their ‘normal life’ to be handle what is going on around them,” Jozann said.
CUNA Mutual Group continues to be a major supporter of Children’s Miracle Network and CHOC Children’s.
“I’m really humbled by the support my company gave me back then and still give today.”
Today Sammy is doing well though she still visits CHOC Children’s for checkups every so often. But her experiences at the hospital are fond memories for Sammy. Jozann said Sammy has never been frightened walk into CHOC and even asks when she can go back. She really liked watching movies on a headset during an MRI, Jozann said.
“Frankly going through this with Sammy just gave my husband and I so much appreciation for how much work it goes into the care of children within our community,” she said. “It’s not just about the science and the medicine; they look at ‘care’ from a thousand different angles and every angle puts the child at the center of everything.”
Sammy is one of 10 million kids helped each year through Credit Unions for Kids. Visit www.cu4kids.org to learn more about how to get your credit union involved.