Katelynn Miller of Grove appears almost like any other 3-year-old.
Often running and playing with her brother, she stands about 3 1/2 feet tall, has short strawberry hair and pinkish-purple glasses around her blue eyes.
At first glance, one probably would not have a clue that she has had five brain surgeries.
Her mother, Calli Smith, said Katelynn was “normal” when she was born Jan. 18, 2014, in Joplin, Missouri.
“Her body temperature was low at first, but we just had to keep her as dressed as possible or under a heating lamp,” Smith said. “After she stabilized, we took her home at the end of the second day.”
In July, at 6 months, Smith said Katelynn’s pediatrician started having concerns about her head size; it was abnormally large. In October 2014, at 9 months, it was even more so.
The pediatrician made Katelynn a neurology appointment in June 2015, but Smith said they did not make it.
In March 2015, Smith said Katelynn woke up unable to function.
“She couldn’t hold her own head, she couldn’t crawl, nothing,” Smith said.
After going to the emergency room, Smith called her pediatrician. She said he told her Katelynn had probably had a seizure, and that she should get her to Children’s Mercy Hospital in Kansas City, about three hours away, as soon as possible.
At Children’s, a nurse ushered Katelynn into a CT scan. Smith still remembers his name, Josh.
She said he played the movie “Frozen” to keep Katelynn calm while the X-ray images were taken, and then ushered the family into a room. He said it would be at least an hour before there were results, so they could make themselves comfortable while he tried to find toys for Katelynn.
“Before he could come back, three doctors were walking in the room,” Smith said. “I thought, ‘Well, this is not going to be good news.’”
After introducing themselves, the doctors initially told Smith that Katelynn’s life expectancy was 48 hours. A neurosurgeon determined nothing could be done, and the doctors told the family they would wait to “see what happens.”
At about 2 a.m., Katelynn was admitted to a room.
Three hours later, she quit breathing.
Nurses used a method called pediatric “blow-by” oxygen to restart her breathing. Smith said “blow-by” oxygen is blown onto a child’s face, instead of blown through face tubes that some children do not tolerate.
After two weeks, Katelynn was released, but the doctors still did not know what was going on. Smith said they scheduled follow-up appointments, and eventually switched doctors.
Smith said Katelynn’s new doctor diagnosed her with an arachnoid cyst, basically, a fluid sac between her brain and skull.
“The doctor told me it would never change, never affect her life, never grow,” Smith said. “He said the problems she was having were not from the cyst.”
Smith said Katelynn was scheduled for yearly follow-ups with a neurologist, and they moved to Grove.
In January 2016, Katelynn was hospitalized for five days with pneumonia. A couple of days later, she had it again. After four more cases, Smith said the doctor called Dr. Terence Carey, a pulmonologist at St. John Medical Center in Tulsa, and Katelynn was admitted to St. John.
There, Smith said doctors took biopsies of Katelynn’s lungs and used tubes to pull fluid out of her lungs, until they realized their efforts weren’t curing the pneumonia.
“They were feeding it,” Smith said.
Katelynn was diagnosed with mycoplasma pneumonia; a form of pneumonia Smith said is rare in children. Smith said it took six antibiotics to kill the pneumonia, and Katelynn was eventually released. But when Katelynn went back to Carey for a follow-up appointment in June 2016, she had a seizure in his office, and was admitted again.
After an MRI, Smith said Carey came to her in tears with the results; the cyst had doubled in size.
“He said, ‘There is no way this is not bothering her,’” Smith said. “That’s when a whole other roller coaster started.”
She said Carey prepared Katelynn to transfer to OU Medical Center in Oklahoma City, but the pediatric neurosurgeon she was referred to would not accept Katelynn as a patient.
After a couple of months of calling and being told “If you keep calling me, it’s going to take a lot longer to get back to you,” Smith said she turned to her other referral, Dr. Meredith Woodward.
“And she was amazing,” Smith said. “She actually met us. She looked at Katelynn; looked at her scans.”
Smith said she and Katelyn went to meet Woodward at Saint Francis Hospital in Tulsa on Sept. 1, and Woodward had Katelyn in surgery the next day. The surgery was supposed to be about two hours long, but Smith said it took eight hours.
When Woodward briefed her, she said Katelynn’s skull was surprisingly thin; she had only used a scalpel to cut through it, when she normally uses a drill.
“As soon as they [cut through her skull], they said there was fluid shooting out of her head,” Smith said. “The pressure was that high.”
Smith said Woodward put in an External Ventricular Drain (EVD), which basically drains the excess fluid from the skull to an IV bag. Smith said doctors used a laser to keep the bag level with Katelynn’s eardrum, the center of her brain, and in five days, she filled five bags.
By the seventh day, the EVD was clogged, so Katelynn went back to surgery to have a shunt and valve installed. Smith said Katelynn’s shunt runs from her cyst to below her belly, draining excess fluid so it will eventually be expelled through urination. The valve regulates the flow of fluid and pressure in her skull.
During the surgery, it was discovered Katelynn had, not one, but three cysts; one in each layer of her brain. Doctors also cut a hole in her third ventricle, which is one of six cavities in the brain that hold spinal fluid, to allow the fluid to circulate more freely.
“The doctors said, ‘Everything should be fine now, but we’ll watch her for a couple days,’” Smith said.
That night, Sept. 7, at about 9, Katelynn went unresponsive. Smith said she was vomiting, “but was out cold.”
She said the hospital staff called for Woodward and then turned to her.
“They said, ‘Look, we don’t know what’s going to happen,’” Smith said. “‘You guys should probably go ahead and call your family to come up here.’
“It’s still hard to think about,” Smith said. “That’s twice in two years I’ve been told my daughter was going to die. She’d overcome everything and then go right back down.”
Doctors later discovered the quick change in pressure is what had caused Katelynn’s decline. Because her brain had functioned at high pressure for about two years, it could not function at a lower, normal pressure, so it shut down, Smith said.
Her valve was used to increase her pressure to the intensity it once was, and when she was stable, it was slowly weaned to a normal pressure. Smith said they went home mid-September.
In December, Katelynn had a fever, and was transported to Tulsa by ambulance. Smith said a doctor looked at her like she was stupid, but she pleaded that they run tests because of Katelynn’s low immune system.
Smith said the tests showed Katelynn’s white blood cell count was 24,000, and a virus is ruled at a count from 7,000 to 10,000. Katelynn was admitted to Saint Francis and the doctors re-ran the tests, and her count was up to 25,000.
“They said, ‘Whatever this bug is, it’s duplicating quickly,’” Smith said.
She said Woodward did a shunt tap on Katelynn, where she stuck a tiny needle into the reservoir of her shunt, and found the infection was in her spinal fluid. Smith said Katelynn was put on antibiotics and released.
In January, they were back again.
“She was vomiting and was excessively cranky, more cranky than a 3-year-old should be,” Smith said.
At Saint Francis, doctors found the valve in her shunt had failed, and went into emergency surgery to replace it. Smith said most people with shunts have the same valve their entire life, but Katelynn is on her second valve, and might have to move to a third.
Katelynn went home after surgery, but Smith said she did not improve.
“She was still vomiting and was cranky,” Smith said. “Her speech was worse.”
She went in for a surgery in February, and doctors discovered the hole they had put in her third ventricle six months before had closed, causing pressure to build inside her head.
Smith said Woodward had proposed to “attempt a very dangerous surgery” to re-open the hole; she would go in through the back of Katelynn’s head without puncturing the cyst to place a stint in the third ventricle to hold it open. They were going to plan the surgery in March, but Smith said Woodward no longer works for Saint Francis.
Saint Francis referred Katelynn to the same neurosurgeon she had never heard back from, so she refused to try to contact her again. Now, they see a surgeon in Texas, whom Smith said wants to remove Katelynn’s shunt to “see what happens.”
“I said, ‘I will not allow him to experiment on my kid,’” Smith said. “And my husband said ‘Well, you were going to let Woodward do it,’ and I said, ‘Dr. Woodward gave our daughter a life.’
“We went from constant screaming fits, her yanking her hair out and rubbing her head across the floor,” Smith said.
Smith said through her years in the hospitals and doctors offices, she has met parents of other kids who have shunts, but their kids were old enough to tell their parents about the pain of pressure in their brains. She said the parents said their kids would rather slam their heads indoors to feel some other type of pain, treatable pain, than to suffer with the pain of pressure.
“We used to have a ramp in the backyard, and [Katelynn] would purposely jump off it,” Smith said. “The pain from increased pressure is an incurable, untouchable pain.”
Smith said Katelynn is on 15 or 16 medications every day, and has many other medical issues. She has chronic lung issues from her bouts with pneumonia, such as asthma, dysphagia (difficulty swallowing) and lung scarring; medically induced autism that only shows when her shunt is failing; and post-traumatic stress disorder and anxiety when she visits doctors.
“I took her to the dentist today and she stopped me and said, ‘I said no boo-boos,’” Smith said.
Smith said she has found an “amazing” primary care provider in Grove, Lainie Littlefield at Family Medical Center, but not without difficulty. She said she called every primary care office in the area for a year, but no practice would take Katelynn.
She said Katelynn is a liability, and her shunt seems to scare medical personnel.
“Do you know how many ERs we’ve been to that say, ‘What’s a shunt?’” Smith said. “I know she’s not the only shunt kid here. She might be the youngest one, and probably the only one with an arachnoid cyst, but I know she’s not the only one.”
Smith said she chooses to stay in Grove because of the people. She does not want to live in bigger cities, though they might have more advanced medical care, because of the crime rates.
Smith said she wants Katelynn to be in public school so she can interact with other kids. She said Katelynn’s brother, Seth Smith, 5, is her best friend.
“She just talks and talks to him every day,” Smith said.
Katelynn does speech therapy every week, which Smith said she has been doing since she was 14 months old.
“Not even six months ago, you could not understand her talking to you,” Smith said.
Kausha Sayles of Grove, Katelynn’s aunt, said it is all thanks to Woodward.
“[Woodward] said she was going to make [Katelynn] better, and she delivered on the promise,” Sayles said. “A year ago, [Katelynn] wouldn’t talk to anybody. But now, she’s a social butterfly and a sponge when you’re teaching her.”
Smith said Woodward is back in practice in Tulsa, and is helping plan Katelynn’s next surgery to possibly replace her programmable low-pressure valve with a non programmable high-pressure valve for adults, because she still cannot function most days on the valve she has.
Smith said she works two jobs to offset Katelynn’s medical bills, and said Children’s Miracle Network Hospitals in Joplin is helping them out, though they’re outside of its district.
Smith’s husband, Justin Smith, adopted Katelynn’s brother, Seth Smith, 5, about two months ago, and said he is adopting Katelynn next year.
The constant doctor and ER visits “take a toll on everybody,” but Smith said she does not feel sorry for her family, and she does not want anyone else to, either.
“We have a good family,” Smith said. “We have a home. We have two beautiful children.”
“Yeah, and look how many movies we have,” Seth said, pointing excitedly inside a TV cabinet.
"Before he could come back, three doctors were walking in the room. I thought, ‘Well, this is not going to be good news.’"
“It’s still hard to think about. That’s twice in two years I’ve been told my daughter was going to die. She’d overcome everything and then go right back down.”
“They said, ‘Whatever this bug is, it’s duplicating quickly.'”
'Dr. Woodward gave our daughter a life.'