Visually Impaired Baby Faces New Hurdle
By Orlando Health
As a first-time mom nearing the end of her pregnancy, Anne was delighted at the thought of her family’s future. Though her pregnancy had been difficult, she knew meeting her baby girl would make the journey worthwhile. But when she welcomed baby Penelope at Orlando Health Winnie Palmer Hospital for Women & Babies, the two began a journey unlike anything she anticipated.
Penelope was born blind due to bilateral corneal opacity, a condition involving thinning and clouding of the cornea and its attachment. As a new mom to a child with a difficult condition, Anne was completely overwhelmed. Still, it was the empathy and dedication shown by staff at Orlando Health Winnie Palmer that gave her hope. “The nurses there were the most compassionate nurses ever,” Anne said. “They not only took care of Penelope, they also focused on me and made sure I didn’t sink into postpartum depression.” In the following days, the team referred Penelope to a specialist in Pittsburgh, Pennsylvania for additional care.
Finding the Right Team
At two and half months old, Penelope had a cornea transplant that partially restored her sight, but she is still visually impaired and considered legally blind. Complications caused by steroids aiding in her recovery brought attention to gastrointestinal issues such as reduced appetite. And due to anesthesia for multiple surgeries to correct her vision, Penelope suffered a slowed digestive tract and constipation. As a result, she had trouble chewing solid foods and consuming enough calories, leaving Anne concerned about her daughter’s growth and weight gain.
When these issues arose, Penelope was already seeing the Orlando Health team, but Anne was unfamiliar with the Orlando Health Arnold Palmer Hospital for Children Feeding Difficulties Center. The facility is home to a team of highly specialized gastrointestinal physicians, speech and language pathologists, occupational therapists and registered dieticians working together to provide comprehensive, personalized care to children and families. Anne quickly realized this was the level of care Penelope needed.
Orlando Health has a fabulous institute which Penelope needed. That’s how it just became a regular part of my life. – Anne, Mother of Penelope
Once Anne found the team at the Feeding Difficulties Center, Penelope began care with Dr. Nishant Patel and Dr. Devendra Mehta. Both are board-certified pediatric gastroenterologists with Orlando Health Arnold Palmer Hospital for Children Center for Digestive Health and Nutrition. They first coordinated with the hospital in Pittsburgh to ensure treatment wouldn’t interfere with any of Penelope’s medications. To better assess Penelope’s care needs, they performed an endoscopy that revealed a hernia in her esophagus, adding to her feeding difficulties.
Dr. Patel and Dr. Mehta prepared a full-fledged plan for Anne to implement at home with Penelope. After over a year of enduring these issues in addition to Penelope’s vision problems, she was incredibly relieved to have such a committed team guiding the way. “For 13 months, I’d been dealing with feeding challenges with her,” Anne said. “I walked into Dr. Patel’s office and he said to me, ‘you are not leaving here today without an NG (nasogastric) tube. You are not leaving here today without a plan to put her on track.’”
The plan Dr. Patel and Dr. Mehta designed for Penelope provided Anne with a total understanding of what her daughter needed to establish better eating practices. To encourage Penelope as she enjoyed meals at the table, Anne could get her back on track by reminding her to keep eating and congratulating her for chewing properly. The team also educated Anne on food textures, starting Penelope with softer foods, then gradually introducing more solid textures to progress through the stages of chewing.
Penelope’s oral motor skills have improved through speech and occupational therapy with the Orlando Health Arnold Palmer team. These therapies taught her how to chew using all the muscles in her mouth. She’s now eating independently and no longer needs a feeding tube. Anne’s wishes she connected with Dr. Patel and Dr. Mehta even sooner. She’s adamant that Penelope’s extraordinary improvements are because of their care. When they began seeing the team, Penelope weighed about 23 lbs., making her nearly 8 lbs. underweight for her age group. Just eight months later, she weighed 32 lbs. and had completely transformed her way of eating.
From this experience, Anne learned the importance of a child’s care team and that the parent plays an equally important role every step of the way. She’s grateful that Penelope’s doctors always gave her the play-by-play and never left her watching from the sidelines. “Orlando Health makes sure the parent is part of the team. I didn’t feel like the doctors were just giving me instructions,” Anne said of her relationship with Penelope’s caregivers. “I felt like they were understanding my daughter’s needs and my fears and concerns. They were helping me deal with those fears by giving me proper therapies and proper treatment plans so we were working together.”
As this super mom continues working hand-in-hand with their trusted team at Orlando Health Arnold Palmer, she’s working with her little girl by promoting healthy eating and chewing habits. She feels fortunate to say Penelope isn’t the same child she brought in for care in March. Her days are now filled with playtime and pretending using her one-of-a-kind imagination as she creates her own adventures. Anne is glad to be along for the ride, so long as her daughter is happy, healthy and full of love, pizza, pancakes and chocolate ice cream, which are Penelope’s favorite foods.