Little Cali Fowler, 4, is no stranger to waiting.
Every six weeks she waits with her mom at (MEETH), where she has undergone 12 facial surgeries and more than 40 laser procedures to treat the purple-blue lesions growing on her face.
On a recent trip to MEETH, Cali’s two older brothers came along. With time to spare before yet another procedure, Cali assumed the role of doctor, taking her brothers’ temperature using a box of colored pencils from the welcome kit MEETH provides to its pediatric patients. After a full workup, Cali diagnosed one of her brothers with two brains and a cavity. He did not require medical intervention.
Her brothers helped Cali pass the time on that trip, but usually it’s just her and her mother, Amber Hendrix.
“It’s tough each time, knowing that she has to go in for a surgery or treatment,” she said. “I try to keep her as calm as possible, but as a parent it’s so hard to watch her get antsy and nervous before going into the operating room.”
The whole process — pre-op, treatment, recovery, the journey back and forth — has become routine. But, it never becomes simple.
Cali was born this way—with marks on her face. At first, it appeared as regular bruising. But the marks never went away. Instead, they grew and grew, causing Cali intense headaches and disfiguring her face. She was finally diagnosed with glomuvenous malformation, a rare condition caused by abnormal blood vessels, by, director of the Center for Vascular Anomalies at MEETH.
“Dr. Waner knew exactly what to say from the moment we walked into his office,” Ms. Hendrix said. “He looked at Cali and reassured us with a plan.”
Cali has been coming to MEETH since 2015. Most of her procedures take less than an hour and are slowly improving her quality of life. However, it’s the in between moments before and after the procedures that can be the most difficult.
“It’s important that children feel at ease in our facility, whether they’re returning regularly or coming into a hospital for the first time,” Dr. Waner said. “Parents feel relieved when they walk in and see, right away, that we’re ready to care for the whole child.”
This is the concept driving MEETH’s pediatric enrichment program, an initiative rolled out in 2018 by MEETH’s Pediatric Steering Committee, with the help of Lenox Hill Hospital, Cohen Children’s Medical Center and the Center for Advanced Medicine. The goal is simple – decrease the anxiety level with the parents and increase the happiness with the child.
Bright hues and playful details across the hospital are one way they are accomplishing that. Jungle, rainbow and underwater themes turn recovery rooms and surgical units into places where kids can have fun on an otherwise stressful day. The new parent waiting room features a bright blue wall covered in framed drawings—each one made and autographed by a child who came in for treatment. It’s the “Patient Wall of Fame,” and Cali’s crayon butterfly was the first picture on display.
“The kids love it,” said Kimberley-Ann Smith, project lead for the Pediatric Steering Committee and assistant nurse manager at MEETH. “They feel like stars when they put their artwork up on the wall for everyone to see. It makes them feel happy to be here.”
From the moment a child enters MEETH, they are greeted and admitted by staff who received pediatric specialty training. While mom or dad fill out paper work at the admitting desk, the child is given a special welcome kit filled with pencils and crafts. And when they get to the holding area before surgery, their nurse wheels in a three-shelf rolling cart packed with even more age appropriate goodies, which Ms. Smith meticulously updates with new choices.
The idea behind the cart is not only to offer kids fun amenities, but also to empower them with choice.
“They’re brought here by their parents. They’re told that they’re going to have a needle or anesthesia. Kids don’t get to make many choices that day,” Ms. Smith said. “So, we try to give some power back. We make them feel special and let them know that the day belongs to them.”
And parents are noticing the difference, noted Richard Braunstein, MD, executive director of MEETH.
“This initiative is making us not just one of the best places in the health system for children, but one of the best places anywhere for a child to have surgery,” he said.
Remembering little Cali, a frequent visitor to pediatric surgery, Ms. Smith knew she had the perfect candidate to help her test the new amenities cart. And she was right—as soon as it wheeled in, Cali lit up, going right for play-dough and princess crowns.
“Her reaction confirmed for me how important this is,” Ms. Smith said. “Cali was our first princess. She’s become a major part of what we do and we keep her in mind every time we introduce something new in the program.”
Another feature of the initiative happens in the operating room. Children are accompanied by their parent, who stays with them until they fall asleep. The anesthesia mask comes in several flavors – bubble gum, cotton candy, strawberry and cherry – which the child gets to choose from.
After Ms. Hendrix sings with Cali to help her fall asleep – a kid-friendly version of counting backwards – the procedure begins.
Dr. Waner uses multiple lasers to target and destroy the abnormal blood vessels that cause Cali’s skin to stain. While he could eliminate all of the purple-blue marks, the pioneer in vascular anomalies said he walks a very fine line in how he treats the disease.
“If we do too much you can get scarring, and if we do too little you don’t get any effect,” said Dr. Waner, who hopes to get Cali looking as normal as possible before she starts school. “Each treatment shows more progress. There’s no article or textbook chapter to tell you what to do, but we’re breaking new ground and Cali is an example of this.”
The lesions and masses that once obscured Cali’s face are now reduced to a swollen cheek with fading bruise-like marks. Cali may need to continue these treatments for the rest of her life, Dr. Waner explained, but the hope is that they will be less frequent.
Cali is still waiting—waiting for her next procedure to come and go, waiting for her stains to fade and her face to get better. But, she also has much to look forward to: being in school for the first time with other kids, and, the next time she visits MEETH, seeing nurse Kim with her cart of crowns and toys.
“This has made a huge difference for us—not just Cali, but me as well,” Ms. Hendrix said. “None of this is easy, so to see her less stressed is amazing.”
“It’s lightened Ms. Hendrix’s heart to know that Cali is happy, as it would for every parent,” Ms. Smith added. “It’s a small thing, but it’s a really big thing.”