Primary Children's Hospital, providing care for thousands who cannot pay

Primary Children's Hospital, providing care for thousands who cannot pay

(Laura Seitz/Deseret News)


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SALT LAKE CITY — Every three weeks, 7-year-old Elsie Atwood spends a day at the "spa."

She orders all her favorite foods, and her mother rubs her feet while she gets an intravenous blood treatment and various blood tests at Primary Children's Hospital.

The day is part of a new normal for the Alpine duo and something they'll be doing for quite a while, perhaps at longer intervals, though, if Elsie's condition progresses.

For now, it is keeping the young girl alive.

Something was different about Elsie at Christmastime in 2013. She didn't seem to have the energy to enjoy a day of sledding with her cousins and was unusually tired as she opened her gifts.

She would lie down on the stools next to her as she ate breakfast each day, and she had developed a little cough — mostly just a barking nuisance, and definitely not one that was productive.

"I didn't think much of it for a couple days, but then, call it mother's intuition, I thought she needed to go to a doctor, you know, just to have it checked," said Elsie's mom, Ana Atwood.

Atwood was out of the country at the time and relied on long-distance contact with her husband, Millen.

Millen Atwood said his daughter "looked fine" and had some tests done at a pediatrician's office in American Fork. But when the doctor came back in the room, he said, it seemed "they didn't want to tell you what they heard and saw because they didn't know for sure, but you knew it was serious."

The doctor's office had summoned an ambulance to take the pair to Primary Children's immediately.

When they arrived at the hospital, a team of doctors and nurses was ready and waiting to care for Elsie. It was later discovered that she has a rare disease called Takayasu arteritis — inflammation of her blood vessels that can lead to high blood pressure, a damaged aorta, and ultimately heart failure and/or stroke.

Takayasu affects mostly females, typically in the middle-aged years. It is most common among Asian women and is often called the "pulseless" syndrome.

By the time Elsie arrived under medical care, doctors could not find a pulse in her legs, and with a lack of proper blood getting to them, her vital organs were dying.

"Everything from her diaphragm down was shutting down," Millen Atwood said.

Photo credit: Laura Seitz/Deseret News

Doctors induced a comatose state to preserve Elsie's body longer, but said she was very near death, according to her dad.

Upon arriving back in Utah, Ana Atwood said she was "heartbroken" at the condition her youngest daughter was in.

"She looked lifeless. They had 12 pumps going, and she was on a strong respirator. I didn't recognize her," she recalled, adding that she knows of two other children with the disease who live outside of Utah and neither seems to be doing as well as Elsie is today.

Elsie needed emergency heart surgery, but it would be risky because the disease made her arteries brittle. A heavy dose of steroids stopped the inflammation, but blood wasn't flowing normally and couldn't without an operation to place a stent in her heart.

"We were prepared for the worst. We were told she could die," Ana Atwood said.


She looked lifeless. They had 12 pumps going, and she was on a strong respirator. I didn't recognize her.

–Ana Atwood


The operation, however, was a success. Elsie, who took up residence in the hospital's pediatric intensive care unit, began recuperating and then experienced a tremendous setback — she lost about five units of blood through burst arteries in her colon.

Her family watched and waited with hope as other children and families in nearby rooms at the hospital experienced similar setbacks and sometimes fatal outcomes.

The Atwoods were discouraged, and with the rarity of the disease, doctors didn't have many answers. After a 12-hour surgery in which doctors used a fairly new/experimental technique of employing torpedo-like fixes in the arteries in her colon, Elsie had a new lease on life.

"All of a sudden, she just came alive," Ana Atwood said.

The then-6-year-old sat up, asked for a "Rainbow Loom" to make bracelets out of tiny rubber elastics, and started turning them out like crazy. She informed her parents she was ready to go home.

"It was like a miracle," her mother said, adding that the operation brought the girl's blood pressure from nearly 170 to 140 almost immediately. Medications then took it to 115, and Elsie continued to do better and was home after three months in the ICU.

The family recently adopted a Pomeranian, named Chanel, who has quickly become Elsie's best friend.

Photo credit: Laura Seitz/Deseret News

The dog and an anti-inflammatory diet low in sodium and replete with healthy foods helps to keep Elsie's blood pressure down and has turned away any side effects of depression or anxiety the young girl experiences from high doses of medication helping to keep her alive.

Takayasu arteritis is a chronic condition and is believed to be autoimmune in nature, perhaps sparked by a virus or even genetics. Problems akin to those that landed Elsie in the hospital the first time could return without notice, but her parents hope to help her live a long and healthy life.

"She looks like any other child," Millen Atwood said.

"Her insides are what's different," Ana Atwood added.

Elsie has extra veins throughout her body, as it made adjustments to deal with the oncoming disease and feed blood to her organs as Takayasu took over her small frame. Someday, though, she may need heart bypass surgery. It could come sooner rather than later.

"You always wonder when it will be, when it will happen," Ana Atwood said. "You know it is around the corner somewhere, but we try to be positive."


We owe a lot to the donors. They helped pay our bills and it provided a lot of relief for us.

–Millen Atwood


The near-death experience has changed how the family functions. They live differently and care less about material possessions or credit card bills, which piled up with each day Elsie spent in the ICU.

"We owe a lot to the donors," Millen Atwood said. "They helped pay our bills and it provided a lot of relief for us."

The family owed more than $1 million at one point. Renovations on their old home were halted, and the family continues to live amid the dust and unfinished projects, but still finds so much joy in that the youngest member is still with them.

"Our daughters have been strengthened in character. They learned to empathize with and serve others," Millen Atwood said. "I wouldn't wish this experience on anyone, but I'd wish everyone could have the opportunity to grow and learn like we did."

"Every trial makes you a better person," Ana Atwood said, adding that she's grateful her daughter was treated at Primary Children's Hospital, where she likely met with the "right people at the right time."

Persistent doctors, she believes, helped to save Elsie's life.

Since being hospitalized, Elsie, who speaks three languages and swims competitively, has learned to play the piano. Her parents believe some of the one-on-one therapy Elsie received at the hospital incited a deeper love of music. She even wrote a song about her own recovery, "Get Me Out of Here, I Want to Go Home," which is what the young girl told to doctors at the beginning of her ordeal.

Photo credit: Laura Seitz/Deseret News

"We tried to be proactive as parents and just have faith," Ana Atwood said. "Without Primary's, she would not be sitting with her today."

Elsie is just one of tens of thousands of children, up to age 21, assisted each year by Primary Children's Hospital, which serves communities throughout more than 400,000 square miles in the Intermountain West.

In 2014, the Intermountain Healthcare hospital received 41,573 emergency room visits and performed more than 2.7 million laboratory tests and 12,080 surgeries. The hospital averages about 190 patients each day, and the average child spends almost four days there.

Primary's has a mission of keeping "The Child First and Always" and offers medical care regardless of a family's ability to pay, which resulted in more than $14.4 million expended to cover 9,269 hospital visits by children in need throughout 2014.

"Every penny of what is contributed goes to help the children," said Sharon Goodrich, director of the Primary Children's Hospital Foundation, the hospital's charity program. "And every day we're reminded of the goodness of a community that reaches out to help others."

Like Elsie, many children come through the hospital's doors without knowing they have a life-threatening illness, Goodrich said. They sometimes leave with diseases they'll have to manage throughout their lives, meaning diagnoses can change everything for their families.

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And while many people don't know firsthand the services that Primary Children's Hospital offers, many are indirectly impacted and understand how important the facility is to neighbors and relatives, as well as the community as a whole.

"Everyone in this valley has been touched in some way or another by Primary Children's Hospital," Goodrich said, adding that the hospital serves the largest geographical area of any children's hospital in the continental United States.

It is the only pediatric hospital in a five-state area, including Utah, Idaho, Wyoming, Montana and Nevada, and it serves the most critically ill and injured children from those states.

"The helicopter lands here three to five times a day," Goodrich said.

Primary's emergency department is one of just over a dozen pediatric trauma 1 centers in the country.

"We are so fortunate to have it here," she added, saying families would have to go to Denver or the West Coast to receive the care they need.

The foundation supports various programs within the hospital that help with therapy and recuperation, including music and craft programs, and end-of-life care and bereavement for families of children who don't make it. And the foundation is supported completely on donations from the surrounding community.

"We have a wonderful community who loves children, and they are investing in the lives of these children," Goodrich said. "Every life is precious, and you see it in the outpouring of love and concern."

KSL holds an annual televised telethon to gather funds for the hospital and the people it serves. Goodrich said the station "helps tell the heartfelt stories in a way that people would never have the opportunity to see," including intimate areas of service at the hospital, where the public isn't usually permitted to see.

"They see firsthand how their contributions are helping people," she said. "We just hope people will watch and call in their pledge and be part of the team at Primary Children's Hospital."

The telethon will be televised 6-9 p.m. Friday on KSL Channel 5. Contributions can be made during the telethon by calling 801-662-6222 or toll free, at 800-762-7262, or online at www.primarychildrens.org/donate or www.KSLkids.com, or by mail to Primary Children's Hospital Foundation, P.O. Box 58249, Salt Lake City, UT 84158.

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