Proud parents David and Cristy Stone knew their daughter Mirabel had health complications before she was born. After a pre-natal ultrasound analysis by doctors, she was diagnosed with hypoplastic left heart syndrome, a rare congenital heart defect that caused the left side of Mirabel’s heart to be severely underdeveloped. On the sixth day after her birth, Mirabel underwent the first of two open-heart surgeries performed at Seattle Children’s Hospital.
Complications ensued, including arrhythmias, seizures, and bleeding in her brain. David describes this period of Mirabel’s life as an emotional rollercoaster, saying that whenever “a little setback occurred, the bottom just dropped out.” Mirabel had a breathing tube in her nose and three additional tubes in her chest, two of which served the ECMO, an intensive care procedure that provided both cardiac and respiratory support oxygen. Mirabel lost her sucking reflex. Since she was not able to learn how to eat, she was given a nasogastric (NG) feeding tube that went down her nose into her stomach to bring nourishment into her body.
The physically and emotionally exhaustive medical procedures paid off, however. As Mirabel’s heart was growing stronger, the family turned to addressing her developmental needs.
Gay Burton, Therapy Department Coordinator and Physical Therapist at Boyer, met Mirabel at the Neonatal Intensive Care Unit at Children’s Hospital when she was just two months old. The two connected immediately. After Mirabel was finally released, Burton provided therapy once a week at the Stones’ house to ensure an infection-free environment, and also to cater to the most appropriate setting for the very young, still recuperating Mirabel.
After Mirabel’s health was evaluated and her parents helped to develop an Individualized Family Service Plan along with Boyer staff, it was decided that therapy would focus on teaching Mirabel how to eat and be mobile. Because of her physical weakness and lack of stamina, early, slow steps were required.
Initially, a pacifier was introduced to overcome her hyperactive gag reflex. After acceptance, the pacifier was dipped in milk so she could swallow several drops. Mirabel was then taught to use a spoon, sipping drops of milk, and learning how to use the utensil in her mouth. It took months before she could tolerate pureed baby foods.
While Mirabel was learning how to eat, Burton stressed that it was important not to overstimulate or overwhelm the process so that Mirabel would not reject the therapy. The NG tube was an impediment to Mirabel’s success in feeding, so Burton and Mirabel’s parents worked with Children’s Hospital to switch Mirabel to a gastric (G) feeding tube. Once she had the G-tube, it became easier for her to swallow and explore more difficult food textures and increased volumes of food and drink.
As with the feeding process, motor development was slow to start because of Mirabel’s weakness. She first had to learn to hold her head upright and steady when sitting. After her trunk muscles became stronger, she worked on learning to roll from place to place on the floor. As her abilities progressed, she realized how powerful her body could be and became highly motivated to practice moving around.
The day Burton showed Mirabel how to pull up and stand next to furniture, Mirabel quickly started taking sideways cruising steps, holding on for support. When she was shown how to stand up while in the middle of the floor, Mirabel stood by herself for a couple of seconds.
Burton worked on balance, concerned that Mirabel learn how to walk properly, even if it meant walking later than her peers. Proper form trumps the speed of trying to catch up, and possibly learning incorrect technique. During therapy, Mirabel’s shoes are off and she is shown proper placement of where to put her feet.
“Gay Burton is magic,” David happily proclaims. There were a lot of firsts with Burton that confirmed for the Stones that therapy played an immense role in Mirabel’s development. With Burton’s prodding, Mirabel rolled over, waved, and took steps for the very first time.
Dramatic improvements are coming more often, as Mirabel continues to blossom and thrive as a 15-month-old should. She is now off oxygen, on less medication, and is currently being weaned off the G-tube, as she is getting used to eating more through her mouth. The most recent excitement transpired when she took 7 continuous steps!
Though Mirabel struggled with a very difficult, serious, and slow early start, the therapy she received from Boyer was crucial to giving her the boost she needed to grow into the bold toddler she is today. Mirabel is now able to do what most other kids her age are capable of doing.
David and Cristy always had an unquestioning faith in Mirabel’s ability to flourish, focusing on strengths and encouraging the next skill to help enable Mirabel to continually propel herself forward. This strong support from the parents is a key component to Mirabel’s development, as family involvement is a cornerstone to the therapy process.
Burton sees part of her role as a coach, teacher, and therapist to the whole family, with everyone focused on seeing Mirabel blossom developmentally. Her parents were always cheerleaders, but it was Burton’s coaching that gave them the confidence and knowledge they needed to challenge Mirabel to master the next higher skill.
The Stones are impressed with the quality of service and dedication given by Burton and Boyer. “We are pleased, impressed, and happy” with Boyer, David relates.
At 15 months, Mirabel Stone is exuberant and outgoing, a toddler who loves to smile and move around the floor. It’s a dramatic contrast with the fragile infant Mirabel was, and a testament to one little girl’s strength and the benefits of early access to therapy services.
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