Relieving the Burden of Care
Prior to her surgery at St. Louis Children’s Hospital, Lucia Shils’ parents, Phil and Amanda, asked if their daughter would be able to walk afterward.
“Our surgeon said, ‘Kids who walk in, walk out,’” recalls her dad, about Washington University pediatric neurosurgeon Matthew Smyth. “We have a picture that is Dr. Smyth’s favorite because she did just that.”
The journey for Lucia and her family has been a long and challenging one over her short life. By the time Lucia was 3, she was experiencing as many as 15 seizures a day. But following a hemispherotomy, with Dr. Smyth on March 5, 2010, this now-7-year-old has been seizure-free.
Born on Oct. 17, 2005, Lucia was diagnosed almost immediately with a congenital heart defect. Although doctors tried to treat her medically in their hometown of Decatur, Ill., Lucia had to undergo heart surgery at a Peoria, Ill., hospital, where her heart was repaired.
During a routine ultrasound of her brain, an irregularity indicated that Lucia had a stroke that affected two-thirds of the left side of her brain, Phil explains. It was the stroke that led to the ongoing seizures.
The Shils, both physician assistants, knew that by 7-months-old, their daughter’s development was not like that of a healthy infant. Their journey took them to doctors and hospitals close to home and the Chicago area to find out what could be done to help their daughter.
“I’m a compulsive researcher, and I was reading everything to find out what could be done for Lucia,” Phil says. “A colleague showed me a brochure from St. Louis Children’s Hospital about the Epilepsy Center, and I called right away to see if we could get Lucia in for an appointment.”
While they were waiting to hear back from the hospital, the Shils had another appointment in Chicago, and while there, they got the call that Lucia would have her first appointment with Washington University pediatric neurologist and epileptologist, Dr. Judith Weisenberg.
“Once we got to St. Louis Children’s Hospital, we felt very comfortable with the level of commitment and focus of the staff,” he says. “We were able to be parents and not fellow clinicians. As a parent, you can’t try to understand everything, you just need to be a parent. They took the burden of care off of my shoulders, and that was huge.”
Based on Lucia’s level of care during her first visit to the hospital, the Shils were confident that the hemispherotomy would help relieve the ongoing seizures their daughter had been experiencing for so long and that Lucia was in the right place for her care.
“Since her surgery when she was 4-years-old, she has not had another seizure,” Phil says. “Although still significantly impaired, being seizure free has allowed Lucia to be the happy and a very receptive little girl she is now.”
The Shils, who have recently adopted a little boy, Felix, cannot say enough about St. Louis Children’s Hospital and what it has meant to their family.
From the wide-open hallways where Lucia loves to run to the caregivers, including her doctors, nurses, therapists and so many others, Phil describes it as an amazing place. They have many special memories including a moment when Lucia’s anesthesiologist began singing one of her favorite songs, “Twinkle, Twinkle, Little Star,” to help calm her and the other caregivers joined in.
“Everybody we’ve ever seen for Lucia has always done his or her very best for her. They never talk around Lucia and everyone communicates with families and patients. Questions are always answered promptly and with concern,” he says. “They make sure we have appointments together since we travel about two hours to get there. And they go out of their way to make sure we are seen by specialists and therapists when something appears unexpectedly.”
Phil recalls the day Lucia was visiting for one of her regular appointments and Dr. Weisenberg noticed a weakness in her right leg due to her stroke. She felt that Lucia would benefit from additional therapies.
“She immediately got her in to see a physical therapist. They just make things happen,” he says. “I’ve never had a time when people were unconcerned or impatient with us. Everybody is really present at Children’s in what they do for their patients and the families.”
In addition to being a health-care professional, Lucia’s dad, Phil Shils, is also a poet. He has written and published many of his poems, often inspired by Lucia. The following are several examples of his writing:
the brain surgeon
he said parts
of her brain
and that would
help guide him
to the parts
that are not
the word gossamer
and i trusted
Hospital Poem 1
The stitching over
my daughters left ear
is shaped like a
the tail of which is
on her temple.
The surgeon told us
this was the way
she would be cut.
I thought he spoke
figuratively but he spoke
literally. They cut her
hair around the incision
and gave it to us
in an envelope.
It's a point of pride to them
that they don't shave
the entire head
and is a comfort
to mothers as well.