KENLEY’S STORY

From Surgery to Super Toddler

There’s no stopping 2-year-old Kenley. The active toddler is constantly in motion – whether it’s chasing her dogs around the yard, mimicking every move her brother makes, or asking her parents to read her favorite story … just one more time.

Kenley has come a long way in a short time. She was only a month old when doctors at Children’s Hospital of Philadelphia (CHOP) diagnosed her with craniosynostosis, a birth defect that causes the skull bones to fuse prematurely and affects the shape of the head. At 8 months old, Kenley had surgery to repair the damage and has recovered well.

Kenley smiling with her familyNow, Kenley’s family wants to help other families like theirs. They created a team, Keeping Up with Kenley, to participate in the Daisy Days 31-Day Challenge. During May, Kenley’s mom Meagan and others will walk, run or jog regularly throughout the month and raise funds to support the Division of Plastic Surgery at CHOP.

Meagan recently answered a few questions about her family’s experience with CHOP and why they are participating in the 31-Day Challenge.

Question: What is your family’s experience with CHOP?
Answer: When Kenley was one month old, her pediatrician referred us to CHOP for an X-ray due to some irregularities in the shape of her skull. These were things that most people wouldn’t notice, but were apparent to us at her birth and had not improved by Kenley’s one-month check-up
appointment.

The next day, Kenley had an X-ray done at CHOP, and two days later we had our follow-up with the neurosurgeon. He diagnosed Kenley with craniosynostosis, a birth defect that involves the premature fusion of one or more sutures of the skull. Although this was a very scary time for our family, there were still things to be thankful for – an early diagnosis, that her condition was treatable, and that Kenley would be cared for at one of the best hospitals in the country.

The only treatment for craniosynostosis is surgery, which Kenley underwent successfully in January 2017, when she was 8 months old. Between the time of Kenley’s diagnosis and her surgery, she was seen numerous times at CHOP by specialists in plastic surgery, ophthalmology and genetics.

Kenley will continue to have annual follow-ups with Dr. [Scott P.] Bartlett [MD], her plastic surgeon, throughout her childhood, and she sees her ophthalmologist, Dr. [William] Anninger [MD], every few months for issues related to her craniosynostosis.

Throughout Kenley’s journey, she has always received the most amazing care and everyone we have worked with at CHOP has been so wonderful. We will never be able to thank Kenley’s doctors and the staff at CHOP enough for what they have done for her, but we can certainly do our part to give back to this amazing institution, which is why we are participating in the 31-Day Challenge for our second consecutive year!

Question: What do you appreciate most about your relationship with CHOP?
Answer: The care provided to Kenley every time we are there, and the compassion from her doctors and nurses. I never question if we are at the right place or whether she is receiving the best care possible. I know that to be the case through our experience during the past two years.

Question: What motivates you to participate in the 31-Day Challenge?
Answer: All of the patients. These children deserve to continue to receive the world-class care that the doctors and nurses at CHOP are providing. I am happy to do my small part in giving back through the 31-Day Challenge.