SEQUIM — An ember is something one finds in a fire that is dying, yet it is evidence that the fire has the potential to be revived.
When Jennifer and Tim Hanshaw chose the name Ember for their eldest daughter, they had no idea it would one day hold irony.
Like every parent, the couple felt their firstborn was one in a million. Turns out, she’s one in more than 100 million.
For 10 years, Jennifer and Tim sought answers as to why Ember was different, more frail than other children.
She had a hard time keeping up with other kids her age, and there were odd things, like her toenails turning blue when she went swimming.Doctors always chalked it up to asthma.
But recently, after a medical scare that led to Ember’s hospitalization, doctors at Seattle Children’s Hospital finally solved the mystery. Ember’s issues weren’t due to asthma, but rather to a series of factors. The doctors didn’t make just one diagnosis, they made several — all of them serious.
On May 14, while her classmates in Mr. Danielson’s fifth-grade class at Helen Haller Elementary were counting down the days to summer break while completing their daily assignments, Ember was set to undergo a cardiac catheterization at Seattle Children’s.
A “heart cath,” as it is sometimes called, is a procedure that involves a catheter being inserted into a blood vessel in the arm, groin or wrist and then guided through the vessels to the heart. It is used to diagnose and sometimes treat heart conditions.
In Ember’s case, doctors hope to close a hole in her heart that all babies are born with but that usually closes within a few days. In Ember’s case, it never did.
Jennifer explained that Ember needs a particular medication, but the family’s health insurance won’t cover it unless she undergoes a heart cath. But the procedure poses danger: Ember’s heart and lungs may not be strong enough to withstand it.
In another irony, the Girl Scout with the glowing smile will have to risk her life in order to receive the medicine that might prolong it.
Just in time
The events that led to Ember’s diagnosis began in March. She was taken by her parents to a hospital because she was running a fever of 103 degrees and, oddly, was experiencing leg pain.
“We were there for seven hours,” Jennifer said. “And her oxygen levels were a little low and her blood pressure was a little low.”
Jennifer said she was told that the low levels were normal for a child. Doctors recommended giving Ember Tylenol.
“Two days later, she still has a fever and was crying with leg pain, so we took her to her primary (doctor),” Jennifer said.
A chest X-ray revealed that Ember had pneumonia. The doctor said a prescription of Amoxicillin would knock it out quickly and she would feel better within 48 hours.
“Forty-eight hours have passed, and she still has a high fever and extreme pain in her legs,” Jennifer recounted.
Things just didn’t seem right, especially the inexplicable leg pain.
The Hanshaws have an oximeter at home, and it showed that Ember’s oxygen levels were still low. Even though a follow-up visit was scheduled with Ember’s primary doctor, Jennifer didn’t wait to have her daughter seen. The doctor suggested another trip to the emergency room. That time, Jennifer decided she would take Ember to Seattle Children’s Hospital.
“It was like it was meant to be,” she said. “We were the last car on the ferry. They were getting ready to close up.”
Doctors at Seattle Children’s determined that Ember had sepsis. They also detected a heart murmur. Ember was placed in ICU. While there, doctors also diagnosed her with patent ductus arteriosus, a congenital heart disease, as well as pediatric pulmonary hypertension in her lungs.
She was found to have right ventricle dysfunction and a genetic condition called hereditary hemorrhagic telangiectasia (HHT). The conditions are classified as part of Eisenmenger syndrome, a life-threatening condition.
This highly unusual combination affects only one in more than 100 million people, Ember’s parents were told.
Since the diagnoses, more trips have been made to Seattle for various tests. Earlier this month, Ember had an MRI to determine whether lesions that have been found in her lungs also are in her brain. One lesion was found, Jennifer said.
Doctors don’t know what Ember’s future holds.
“They can’t tell me whether she’ll make it or not at this point,” Jennifer said, her voice breaking.
Uncertain future
As these developments were playing out, one of the doctors, who had examined Tim’s medical records, determined that Ember’s 9-year-old sister, Lena, very likely also has HHT, like her father and sister. Testing is being done to confirm it.
Unlike Ember, though, Lena is not facing life-threatening challenges, Rather, she has the potential for having to be on medication for the rest of her life.
Both girls are wearing masks because of their jeopardized immune systems. They are no longer able to go to the Boys & Girls Club. It’s too risky.
Ember is on oxygen at night, her mother said, and oxygen therapy is available for her at school if she needs it. She can’t participate in gym class or do anything that might raise her heart rate.
Despite having missed nine or 10 days of school while she was in the hospital, Ember made up all her work and, according to her mother, is at the top of her class.
“She’s a super smart girl,” Jennifer said.
Right now, the family’s life revolves around Ember and trips to Seattle. Jennifer and Tim are trying to figure out how to pay for everything and how to live with the fear that they might lose their daughter.
Jennifer works in diagnostic imaging for Olympic Medical Center in Sequim. On Fridays, she helps out as a bartender at the Rainshadow Cafe, whose owner is one of her dearest friends. As for Tim, he does remodel work. A very private person, according to his wife, Tim has been dealing with the pain by turning inward.
“For her, we try to be super strong,” Jennifer said of Ember. “She knows what’s going on, but she doesn’t want the details. She just wants to be a kid, right?”
“We’re struggling a little bit,” Jennifer acknowledged. “It’s been tough. I have to sometimes leave the house and have my moments, for sure. I worry. You know, our insurance covers (only) so much, and we’ve got bills that aren’t being covered. And then my van has over 205,000 miles now, and I worry about all the trips to Seattle.”
Despite the situation, Jennifer said the family has faith.
“I do believe God has a better plan for her,” she said.
These days faith is intermixed with darker emotions that Jennifer and Tim try to hide from their daughters.
“I just kind of hold all that in and take it day by day,” Jennifer said. “That’s all we can do.”
Donations to help the Hanshaws can be made at Gofundme.com/f/aid-embers-journey-to-health-and-hope or through Venmo at https://account.venmo.com/u/JenniferHanshaw77. Jennifer can be reached via email at jennyhanshaw@yahoo.com.
________
Kathy Cruz is the editor of the Sequim Gazette of the Olympic Peninsula News Group, which also is composed of other Sound Publishing newspapers Peninsula Daily News and Forks Forum. She can be reached by email at kathy.cruz@sequimgazette.com.
Ember Hanshaw, 11, a fifth-grader at Helen Haller Elementary School in Sequim, has serious medical conditions that, combined, are so unusual they affect only one in more than 100 million people. (Emily Matthiessen/Olympic Peninsula News Group)
