Transforming Moments

Eva’s Story

Editor’s Note - In January of 2003 Sandi and her 3-year-old daughter Eva traveled from their home in Indiana, to Richmond, Virginia, for treatment in the Children’s Feeding Program. A spirited and persistent young girl, Eva has faced many challenges in her life thus far. Swallowing is something Eva’s family was told she would likely never be able to do. But with the help of specialists from Children’s Hospital, it marks yet another hurdle she has overcome. The following reflection on Eva’s life was written by her mom.

Yesterday was a banner day at our house, it was a day we waited and prayed for, but no one could have prepared me for that wonderful day. Yesterday, we put our daughter, Eva, age 5, on the school bus for her first full day of kindergarten.

When she was brought home from the hospital in December of 1999, after five long months, only three weeks after almost being disconnected from life support, I believed she would not survive that winter. I brought my child home to die. Not to say I had given up, I hadn’t, but her prognosis was not very promising. At 5 months old, she was a mere 6 pounds, had chronic lung disease and retinopathy of prematurity, a condition that could potentially lead to blindness, from her 16 week premature delivery (Eva weighed 1lb 2oz at birth). Her twin sister died a day after their birth.

Eva’s life was precarious. She needed a heart monitor and medical equipment that provided supplemental oxygen and measured the oxygen in her blood. She had a gastrostomy tube connected to her stomach for nutrition and also faced severe bowel issues that were life threatening. Each day I would watch for new signs of degradation, with wonder each day I would normally see improvements.

At Christmastime I prayed for no material gifts, I prayed for my daughter’s health and happiness. I wondered if she would ever go on the school bus and attend kindergarten, and if she did, how compromised would she be? I prayed that she would smile and be a joyful child, that she would some day be able to support herself, possibly in a job that we see many developmentally disabled adults holding. I prayed that she would have a satisfying life, overcoming her struggles. I hoped that life would treat her gently from that day forward, that she would have people that loved her and would look beyond her differences. That the general public would realize what a miracle she was and treat her as one.

By springtime we were planning for her future. We saw our first set of specialists to assess her future needs and improve her daily life. Six months later we found an appropriate pediatric craniofacial team (a group of doctors usually comprised of a craniofacial plastic surgeon, ENT, Ophthamologist, Dentist/Orthodontist and a Speech Pathologist). We had to travel three states away, but the craniofacial surgeon we chose felt Eva had a bright future. He helped us draft a plan to improve her life, not just maintain it. Within a year we were moving forward with that plan and he had performed three jaw surgeries on her and repaired her cleft of the soft palate, by then Eva was 27 months old.

Merely six months later we were planning for preschool. At her first evaluation in the spring she was not talking (except for a few choice words), but signing very well, enough to communicate all her needs to the staff. This alone was a shock to the staff. On paper, she does NOT look good, her medical challenges have been many. She was not at all what they expected. Little did we know within two more months she would shock us even more by beginning to talk,. By the time preschool started she was so talkative she had dropped almost all her sign language.

That year of preschool was a big one. We took off for a two-month Feeding Program at Children’s Hospital. Because of medical complications, Eva had never swallowed in her life. Structural abnormalities made swallowing more complicated. We were told repeatedly by specialists that she would never swallow, ever. But at Children’s Hospital she did learn to swallow for the first time. My baby was finally eating; it was indeed one of the largest miracles in her life.

The following year of preschool was uneventful, as she developed normally and kept up, if not exceeding her completely healthy peers. She rode the school bus that year, but only home from preschool, so mommy never actually saw her put on the bus, the staff did that. She thought she was pretty hot stuff.

Yesterday morning, August 26th, 2004 we had that banner day. One of the days I will never be able to forget. Of course, we had the cameras, Daddy waited to leave for work, in order to see her get on the bus for the first time to go to school. Mommy fussed over her and big sister rolled her eyes...what was the big deal, she’d been getting on the bus for five years and it wasn’t that exciting. The bus rolled up and Eva was so excited, doing a Tigger bounce right into her seat. The bus driver strapped her in while we took pictures. Then that fateful moment. The bus doors close and the bus… drives away. Mommy stands there in the driveway with wonder, flashing back to the past five years of struggles, of fears, of joys and hurdles. Remembering that day she sat holding her infant daughter knowing that she might not survive to make it to this moment. And Mommy rejoiced...with tears...because she did.

Update on Eva’s Progress

Eva returned to Children’s Hospital in September 2004 for a four-week “graduate” course in the Feeding Program. This Feeding Program is one of Children’s Hospital’s many specialized services. It is designed to help children who have a medical condition that has affected their feeding and growth. Care is overseen by a team of specialists that includes a gastroenterologist, nurse practitioner, psychologist and feeding therapists (specially trained occupational therapists and speech/language pathologists), among others.

When Eva first came to the Feeding Program in January 2003 she mainly focused on swallowing. At first, she would put food or drink in her mouth to taste it, but would then spit it out. Her team worked closely with her on oral motor exercises. They coached her by providing handling and facilitation to the muscles in her face, while encouraging her when she made correct movements. Carol Elliott, OTR/L, was her primary Feeding Therapist. “Carol could communicate with her like no other,” says Eva’s mom, Sandi.

With time, Eva began to coordinate the movements needed to move food to the back of her mouth and swallow. Soon they were able to increase the volume and when discharged Eva was able to eat pureed foods and drink from a squeeze bottle. “It all came together at the end,” recalls Carol.

Eva’s continued progress at home is supported by her Speech Pathologist and “best buddy” Monique Connor of Memorial Hospital of South Bend, IN. Monique has been a driving force in Eva’s success since she was 7 months old, even coming to Richmond to learn the feeding program protocols in March 2003 during Eva’s initial treatment.

In addition, Sandi worked closely with the team to learn new ways to help Eva during mealtimes. Eva’s improvement continued when she returned home. Within six months she was off the squeeze bottle and had progressed to a sippy cup. She even began trying some “regular” (not pureed) foods. Her favorites are potato chips and beefaroni.

Eva’s goals for her “graduate” program include improving self-feeding and chewing skills so she can be more independent and eat more regular foods. “It is something she loves to do,” says Sandi. “She just has trouble doing it.”

Her daily program involves a series of feeding therapy sessions and services provided by Child Life/Therapeutic Recreation and the Hospital Education Program. During her feeding sessions, her team focuses on helping her maintain proper bite size (bites that are too big can lead to swallowing trouble), improving fork, spoon and cup skills, and developing chewing endurance.

While in Richmond, a noticeably social Eva has made fast friends with some of the other young children in the program. She also shares her mom’s computer to email her friends from school. Still, she’s focused on what she’s here for. Coming from a session in Education to the Feeding Program area, Eva quickly finds one of her feeding therapists to let them know it is time for her feeding therapy. “She’s a tough nut,” says her mom proudly, “with lots of persistence.”

Once again for Eva, her persistence paid off. Two weeks into the program she was starting to feed herself. By her fourth week, she began transitioning her newly acquired skills to the family dinner table, the hospital cafeteria and restaurants. And when she returned to Indiana she was eating finely fork mashed food for the primary source of calories for her meal and is snacking on a variety of table foods. She is now feeding herself at school, marking yet another big step toward a promising future for Eva.

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