“Initially, they thought I was pregnant with twins. It wasn’t until we came to Peoria for an advanced ultrasound that we found out she would have Spina Bifida,” Alexis remembers.
Born six weeks early and breached, Cecilia was delivered by emergency C-section on May 13, 2005 in Iowa City. Alexis describes her birth as chaotic and terrifying.
“There was so many other medical conditions that we were unaware of. They had a team for me and a team for her. We were surrounded by so many people,” Alexis said.
Diagnosed with Spina Bifida Cystica (Myelomeningocele), the worst form of the condition; Cecilia was only an hour old when she went through her first surgery. The most immediate threat was the opening on her back which exposed her spinal cord and nerves to the outside world – allowing them to dangle from her fragile little body. Other secondary complexities threatened Cecilia’s health as well. A hole in her heart, or Ventricular Septal Defect (VSD) was detected and her left knee was turned completely backwards leaving her legs positioned across her chest.
Overwhelmed and scared, Alexis took Cecilia home wearing a pair of leg casts that she wore for the first six months of her life. It was only two weeks later that Alexis began to notice the telltale symptoms of hydrocephalus, an accumulation of spinal fluid in the brain. This was the beginning of their struggle with what is now one of the most nuanced complications associated with Cecilia’s Spina Bifida. To date Cecilia has received 13 shunts to drain off the excess fluid accumulating in her brain; each requiring a surgical procedure and sometimes lengthy hospital stay.
When Cecilia was two Alexis made the decision to bring her to Children’s Hospital of Illinois exclusively. It was there that they began to pick Cecilia’s team of dedicated caregivers. Now Cecilia regularly sees a neurologist, urologist, endocrinologist, surgeon, orthopedic specialist, gastroenterologist and a dentist; all sharing the same goal – to make sure she has the healthiest and happiest life possible.
What would break down many mothers has seemingly strengthened Alexis’ resolve, and when you meet them both it’s easy to see where Cecilia gets her disposition. She is cheerful and calm just like her mother who eloquently shares their story. Their soft spoken nature is paired with a resilient spirit – an unexpected combination that has gotten them through so much.
Today as a 10 year old, Cecilia has gone through a total of 42 surgeries; battling a litany of medical problems all arising from her original diagnosis. She copes by giving back.
Whether it’s a Girl Scout cookie rally, creating treasure chests full of toys or passing out hand crafted goodie bags – they are always looking for ways to comfort other children at the hospital.
“Everyone who comes in makes her feel special and we want to pay it back – our nurses and physicians grow a bond with her and we want to help in the ways that we can,” Alexis lovingly explains.
Donning ear to ear smiles, their kindness is contagious and as the 2016 Fight to the Finish Miracle Family we look to Cecilia and her mother Alexis as shining examples of strength, hope and philanthropy.