To strangers, Henley appears as a curious little girl, full of life and ready to experiment with new things. But what most people donâ€™t realize on the first meeting is that Henley just accomplished an amazing goal. After having a feeding tube for most of her life, she made the progress needed to have it removed in July.
â€œIt was just pride and amazing and kind of unbelievable,â€ says Henleyâ€™s mom Megan Beebe. â€œThere were so many times through our journey that we thought she was never going to eat.â€
Born weighing just four pounds seven ounces, Henley was diagnosed in utero with a two-millimeter ventricular septal defect, a hole in her heart. At seven months old the hole was successfully patched during open heart surgery, but it was around the same time that Henleyâ€™s parents learned she was missing information in her 15th chromosome, the likely cause of the hole. Other side effects of the deficiency are mobility, eye and vision, and feeding issues.
â€œThe first couple months of Henleyâ€™s life it was very, very difficult to get her to gain weight,â€ Megan shares. â€œEating was strenuous, and she would fall asleep.â€
At five months old, Henley finally weighed eight pounds. It was at that point that Henley stopped eating and a nasogastric tube had to be inserted to make sure she was getting the proper nutrition.
â€œIf it came out, we would have to replace it. If she pulled it out, we would have to replace it,â€ Megan says. â€œSometimes we would have to replace it twice in one day. It really built up quite a few oral aversions.â€
When Henley was 11 months old, she transitioned to a gastrostomy tube hoping that without the invasive nasogastric tube in her throat she would be able to go through oral feeding therapy successfully.
In October 2018, Henleyâ€™s therapy began at United Cerebral Palsy of Central Arizona. As she worked through feeding therapy, Henley was able to overcome many of her oral aversions by getting used to things such as putting her own fingers in her mouth, her parents massaging her cheeks, and eventually experimenting with different foods and textures. She went from getting only thirty percent of her nutrition orally to getting eighty percent of it that way.
By January 2020, use of the feeding tube had ceased almost entirely, though Henleyâ€™s parents decided to leave it in through a double eye surgery she had in March and the birth of her younger brother in June. Finally, on July 5, the tube that had been part of Henleyâ€™s daily life for nearly two years was removed.
â€œWe couldnâ€™t believe we were actually taking it out, that she was going to be tube free for the first time in two years,â€ Megan shares. â€œIt was an incredible feeling, it was amazing. All that work and effort, remembering how far we had come, it was just unbelievable.â€
Since the removal, Megan says Henleyâ€™s appetite seems to have grown, and the toddler has even begun to experiment with using different cups. Henleyâ€™s developed a fondness for Cheez-Its, pears and ice cream. Her next therapy goals are to be able to stop using braces on her feet, and to learn to jump without fear.
â€œItâ€™s amazing how much sheâ€™s gone through. Kids are so resilient, sheâ€™s so tough,â€ Morgan says. â€œBut sheâ€™s just happy and full of life. You would not know everything she has gone through, dealt with, and is dealing with.â€
â€œItâ€™s a privilege and an honor to be a part of life changing stories, like Henleyâ€™s,â€ said Brenda Hanserd, CEO of UCP of Central Arizona. â€œThe therapy and support that we offer at UCP makes tremendous difference in the lives of the families we serve.â€
Before the COVID-19 pandemic, Henley was attending UCPâ€™s Early Learning Center for her needs. Her physical and speech therapists come to UCP to work with Henley, her parents and UCP staff during her sessions. Telemedicine continues to be an option for many families during this time.
About United Cerebral Palsy of Central Arizona:
Since 1952, United Cerebral Palsy of Central Arizona continues to prove they are more than the name. With an array of specialists and experts in the field, UCP impacts the lives of more than 3,000 differently abled people each year with the highest quality of care. To learn more about the services, events or how to help, head to https://ucpofcentralaz.org/.