Big Victories for a Little Miracle
“Hi, Doug. Hi, Steven,” two-year-old Blake Hassmer called as he scrambled around the park on a quiet spring morning. Moving everywhere except where the adults were trying to get him to stand for a photograph, Blake was more interested in running to his mom Kim and flying his miniature Dusty Crophopper plane from the movie Planes.
“Blake is a consummate two-year-old,” said Kim describing her son, who on another morning, ran out of his older brother’s room with blue marker on his face calling, “I’m a tiger.”
But Blake’s energy and typical toddler behavior are constant reminders of how far Kim and her husband David have come since Blake’s November 2012 birth. Kim had a normal pregnancy and delivery, but within days, the Hassmers recognized the signs of reflux, which their older son Wesley also experienced as an infant. Eleven days after birth, Blake, who was having trouble eating and gaining weight, had the first of many medical tests that in the last two and a half years have uncovered a list of 27 diagnoses and eventually led him to Children’s Hospital of Richmond at VCU (CHoR), where he currently sees 11 pediatric specialists who work together to coordinate his care.
One Day at a Time
Blake’s gastrointestinal (GI) specialists determined that reflux, a milk allergy, gastroparesis (an inability of his stomach muscles to properly empty his stomach) and a variety of other GI issues were responsible for Blake’s slow growth, or failure to thrive. By the time he was three months old, he’d already had numerous physician appointments plus three surgeries and sedated procedures to place feeding tubes.
“We were underneath the growth chart for a considerable amount of time,” said Kim, of her son who didn’t weigh 10 pounds until he was five months old.
Before his first birthday, doctors also determined that Blake’s trachea had not developed properly, which caused a constant asthma-like wheeze, and diagnosed him with bilateral hernias, which required surgery at CHoR to repair. Kim, who quit her job as an elementary school music teacher to care for Blake, carries a four-inch medical binder with all of his records and speaks about his conditions with the knowledge of a seasoned healthcare provider.
“With Blake it’s on-the-job training,” said Kim, who described Blake’s bedroom as more of a hospital room than a toddler playroom. “Some is learn-as-you-go, but the doctors have also been really good about teaching us.”
As months passed, Blake had more hospitalizations and a few emergency room visits as the Hassmers “lived 15 minutes at a time,” managing Blake’s daily medications, feeding pump and gastrosomy tube (G-tube) schedule. They started weekly visits to CHoR’s Feeding Program, where Blake began learning to chew and swallow foods. He had his tonsils and adenoids removed at CHoR to correct obstructive sleep apnea and started sleeping better. Then six months ago, the roller coaster started again.
Since learning to walk at 11 months, Blake’s toes had turned in, but by his second birthday, Kim said they had gotten worse. Although she was assured by Blake’s community pediatrician that he’d outgrow the issue, Kim said, “my momma’s intuition told me something wasn’t right” so she took him to a neurologist at CHoR for a second opinion.
Blake underwent a two-and-a-half hour sedated MRI, which Kim said, “discovered stuff the doctors weren’t expecting.” That “stuff” included an enlarged kidney and hypertension, which caused thickening of the walls of Blake’s heart, and introduced the family to a new group of CHoR specialists including Timothy E. Bunchman, MD, Professor and Chief, Nephrology.
“The number one reason for high blood pressure in kids is kidney problems,” said Dr. Bunchman. “But the problem with high blood pressure in kids is that it’s pretty silent.”
Blake was lucky his hypertension was discovered during the MRI, and he began taking blood pressure medications and being monitored by CHoR’s nephrology team. Because he had a blocked ureter, Blake was referred to CHoR’s urology specialists who found an additional problem with his kidneys’ arteries. As Blake required treatment from additional specialists, Kim relied even more on CHoR’s multispecialty clinics and assistance from her pediatric patient advocate, Jan Kirby.
“I couldn’t have gotten through the last six months without her,” Kim said of Jan. Whether it’s distracting Blake while Kim talks to his doctors, sitting with Blake while Kim grabs a shower or snack during an extended inpatient hospitalization or providing a hug or pat on the shoulder, Kim said Jan “looks out for our family.” She also coordinates Blake’s medical appointments, freeing Kim of the stress of trying to organize visits to multiple specialists.
The Case for Coordinated Care
“Blake is a really complicated kid with a lot of medical challenges,” said Kim. “His doctors are quick to discuss issues with other specialists, and there is a lot of coordination of care.”
Currently those specialists include gastroenterology, immunology, nephrology, urology, otolaryngology (ENT), neurology, cardiology, pediatric surgery, orthopaedics, endocrinology and the Feeding Program.
“Coordinated care is exactly the reason Blake needs to be treated in a hospital like ours,” said Narendra Vadlamudi, MD, DCH, MRCPCH, Assistant Professor, Gastroenterology and Nutrition, who also sees patients in multispecialty clinics with Dr. Bunchman. “Having all the doctors work together makes all the difference in patient care.”
“By being under one umbrella, we can look at each other’s notes and know what each other is doing,” agreed Dr. Bunchman, who also values the partnership of families. “Part of the reason Blake is doing so well is because his mom is an incredible advocate.”
Despite being attached to a feeding pump 50 percent of the day and having to go to the hospital almost every time he gets sick, Blake remains a happy, energetic two-year-old. He jumps, runs and climbs, talks constantly and loves sitting on his dad’s shoulders. Kim said he’s “messy and loud and needs a bath even when we’re only outside for 10 minutes.” And he’s finally growing, reducing his need to see his endocrinologist to once a year.
“It’s a big victory for us to have a doctor say ‘see you in a year,’” said Kim.
The Hassmers are so thankful for Blake’s progress they’ve begun sharing their story at Children’s Hospital Foundation events. At this spring’s reception for Foundation volunteers, Blake charmed the crowd while Kim praised CHoR’s staff.
“My child has grown in ways I didn’t even think were possible a year ago,” she said. “Thanks to GI and feeding clinic, Blake is eating again. Thanks to nephrology, his blood pressure is under control. Thanks to urology, his left kidney is now much smaller in size, his ureter is functioning more normally, and both are well on the way to recovery. Thanks to ENT, his tonsils and his adenoids are gone, and he is sleeping more soundly than he ever has. Thanks to neurology, he had an MRI in December that saved his left kidney. Without the push for this test, we never would have known he had hypertension. Thanks to pediatric surgery, Blake has a working, functional feeding tube that has completely saved his life. Thanks to orthopaedics, Blake is wearing the most adorable orthotics that are helping correct his legs and feet. Thanks to my amazing pediatric patient advocate, I am able to schedule appointments with all 11 of [his specialists] without any conflict in time or date. Our child [who had been diagnosed] as a failure to thrive. And look at my miracle now.”