Feeding Their Needs: Macy Childs and Daisy Ramos
They are brown-eyed, plump-cheeked dynamos—as cute and feisty and funny as only toddlers can be. But they’re not typical toddlers: at age 2, Macy Childs and Daisy Ramos have already triumphed over more medical issues than most people face in a lifetime.
A remarkable partnership between The Children’s Institute and Children’s Hospital of Pittsburgh—plus a whole lot of love from caring parents—helped make those triumphs possible.
Dr. George Mazariegos, Director of Pediatric Transplantation at the Children’s Hospital Hillman Center for Pediatric Transplantation, says, “Because of their medical issues, many of these young transplant patients take little or no food orally—they’ve been tube-fed for most or all of their lives. Once their intestines and liver are functioning, they must learn how to eat. But often they’ve become orally aversive, so taking food by mouth is actually unpleasant. Changing that and helping them learn to eat is a long and complex process.”
Macy—who lives in Buffalo—was only five weeks old when she developed an obstruction that necessitated the removal of her entire small intestine. Later she came to Children’s Hospital to receive a transplanted intestine.
Daisy—who lives in Atlanta—had health problems that began when she was three months old. She received a liver transplant near home, but developed life-threatening complications. She came to Children’s Hospital, where surgeries resolved the complications.
In both cases, the Children’s Hospital surgeries were life-saving—but for the little girls to have normal lives, they had to learn something that comes naturally to healthy babies: how to eat.
That’s where the partnership with The Children’s Institute comes in—because young transplant patients like Macy and Daisy are referred to the highly regarded Functional Feeding Program at The Hospital at The Children’s Institute—the only program of its kind in the region. For children who’ve received transplants, the program is inpatient, usually eight to ten weeks in duration, and highly individualized. The physicians at The Children’s Institute work closely with the Children’s Hospital transplant team for ongoing medical management of the children during their stay. The program is also family-centered—parents stay in the same room with their children, and are an integral part of the program.
You’d never know from Macy’s and Daisy’s little faces that either child had an eating problem: even before their feeding programs began, their cheeks were endearingly chubby. But that wasn’t a result of healthful eating—it was a side effect of the steroids that help prevent rejection in transplant patients.
On admission to the program, Macy was fed primarily through a gastric tube, with nutrition going directly into her stomach. “She had hypersensitivity in her tongue, gagging and a limited ability to take food into her mouth and swallow it,” says Patsy McMelleon, MA, CCC, SLP, the inpatient feeding therapist for the program. Patsy is a speech/language pathologist, and the involvement of that profession in the program often surprises people—but speech/language pathologists are experts on swallowing and other oral motor functions associated with eating.
Daisy, on admission, was eating essentially nothing by mouth, and was fed via a tube that carried nutrition through her nose directly into her duodenum. She was orally aversive, refusing to eat or drink.
Because they couldn’t stay hydrated through oral intake, both children received IV fluids overnight.
Intensity—But the Kids Don’t See It
The program is intensive, with functional feeding sessions several times each day. Nutrition is carefully tailored to the needs of each child—for example, sugar can be problematic for children with intestines that aren’t yet fully functional.
But the kids don’t see the depth and intensity—and that’s deliberate, according to pediatrician/internist Dr. Laura Gorham, Director of the Functional Feeding Program at The Children’s Institute. She says, “For these children, eating is significant work—so we try to make every experience positive, interactive and playful so they’ll be willing to eat.” To that end, children are never forced to eat; that could reinforce negative associations with food.
First steps are familiarization and desensitization—and the old adage that says “don’t play with your food” doesn’t apply here. Macy and Daisy, for example, sat in high chairs with soft food—puddings or purees—spread out on the trays. The kids could walk dolls or toy animals through the food, or drive little cars through it. “The goal is to see and smell and have close contact with the food in a nonthreatening way,” says Patsy McMelleon. “We gradually move from distal to proximal, for instance with the food-covered animals moving from the tray to the child’s arm to nuzzling the child’s cheek.”
As the strangeness diminishes, the therapist encourages the child to try licks (contacting food with the tongue) and kisses (putting food on the lips). Then, very gradually, the child progresses to intake, with small bites and sips.
Once the child begins to accept foods and liquids by mouth, it’s time to start building volumes and upgrading textures. Meanwhile, tube feedings help ensure adequate nutrition, tapering down as oral intake increases.
Some children have developed behavioral issues around eating—for example, tantrums or food throwing. In those cases, the behavioral psychologist members of the Functional Feeding team are called in. And at every step, parents learn the skills that will help them help their little ones to eat. Daisy’s mom, Olga Sacalot, says, “It was hard, not being able to feed my child; a mother needs to do that. I was so happy when Daisy began to eat. I love to feed her.”
Catching Up Developmentally
But food and nutrition are only one aspect of the Functional Feeding program. Dr. Laura Gorham says, “Most of the children who’ve received transplants also have global developmental delays; they’ve been in and out of the hospital most of their lives, and haven’t had opportunities to develop on the usual timetable. So we work aggressively to help them catch up.” That work involves multiple physical therapy and occupational therapy sessions each day.
It works: after the transplants help the children live, the multidisciplinary approach of The Children’s Institute’s Functional Feeding Program helps them move toward a normal life.
When Macy arrived at age 16 months, she was able to walk only one to ten feet, and only with significant assistance. Two months later at discharge, she zoomed along more than 500 feet with only a single hand held. At admission, her grasping skills—important to eating—were at the 13-month level; when she left, they were at the 28-month level. She had progressed to taking about 35% of her daily caloric needs by mouth, and was well launched toward healthful eating.
Today, months after discharge, she continues to make excellent progress at home in Buffalo. As she babbles happily in the background, her mom Tiffany Childs says they’re working on volume and variety, with Macy enjoying new tastes—including pizza. Says Tiffany, “That program is a blessing—they are so good at what they do for children, and so reassuring to parents.”
Daisy, whose Children’s Hospital experience was more recent and who has had some additional medical challenges, is still in the Functional Feeding Program at The Children’s Institute—and she, too, is progressing well. She’s a world-class waver and blower of kisses—and she is gradually expanding both variety and volume of foods. Her current favorites: pureed mac-and-cheese and just about any fruit or vegetable. She is becoming stronger and more agile through her physical and occupational therapies, and, as she makes progress, her sunny, spirited personality becomes more evident every day.
Daisy’s mom Olga says, “At first when they told me I should bring her here, I didn’t want to—I just wanted to take her home to Atlanta. But this place is magical. All the therapies and all the kindness—I have never seen anything like this. And my little Daisy is getting so much stronger; she is eating and she is growing. I am very, very happy.”
Dr. George Mazariegos smiles as he adds, “We’ve been fortunate that Children’s Hospital of Pittsburgh enjoys some of the highest outcomes in the world in terms of survival—and part of the reason is our partnership with The Children’s Institute and their work with children after transplants. They do a wonderful job.”
What might lie ahead for Macy and Daisy—and other children like them? Beverly Kosmach-Park, MSN, CRNP, Clinical Nurse Specialist at Children’s Hospital, says, “We’re optimistic—the combination of Children’s Hospital plus The Children’s Institute plus families who understand and attend to their children’s complex medical needs will give these children a chance at a good future. It’s great to see them moving in that direction.”
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