Evelyn Sherman had a kidney transplant this past Halloween, just 10 days before she turned three years old. Her dad, Keith, was her donor. In honor of Donate Life Month, Evelyn’s mom, Julianne, reflects on their journey as they near the six-month anniversary of the transplant.
Getting the diagnosis
Evelyn was nine months old when she started falling off the chart. I thought my milk supply had dropped off so we were just sort of waiting it out, but she was still falling off the curve. Then we tried to beef up her diet and that wasn’t working.
By the time we got the diagnosis when she was 15 months old, we had made a tour of Children’s. She had some other physical manifestations of something being wrong. She had a sixth toe. She had wine stains on her skin. So we’d been to orthopedics to have her toe removed. And we’d been to dermatology. We felt like we were ending our tour when we got to nephrology. It was our last stop.
Evelyn was diagnosed with renal dysplasia, meaning that the kidney developed incorrectly in the beginning. She also has kidney reflux and that means that the urine is going back up into the kidneys from the bladder. It often causes a kidney infection, but for whatever reason, she didn’t really manifest that.
When the doctor delivered the news that there was something wrong with her kidney, I remember thinking, “I feel like you’re saying something really important to me and it’s just not registering because you have got to be talking about somebody else.” I couldn’t comprehend what he was saying, that I had a critically ill child.
Seattle Children’s is considered a trusted resource for families needing special care. For the Wall family of Ephrata, Wash., their trust in Children’s, including the Craniofacial Center and Orthopedics and Sports Medicine teams, enabled them to become the family they are today. Mindy and Darryl Wall have six children – three biological and three adopted – four of whom have special needs. Here’s their story…
In 1993, the Wall’s second son, Mitchell, was born with a clubfoot and was later diagnosed with Asperger’s Syndrome. At birth he began receiving care at Children’s. Not only was he diagnosed with Asperger’s at Children’s, but he had two different clubfoot surgeries by the Orthopedics and Sports Medicine team, as well as his bracing and casting at the hospital. All of this seeded a long and trusted relationship between the hospital and the Walls. The care Mitchell received helped Mindy and Darryl become more comfortable raising children with special needs, and inspired them to adopt children who needed medical assistance, because they knew the hospital was there to help.
“We got to trust and know our way around Seattle Children’s,” said Mindy Wall. “With this knowledge and resource, we knew we could provide a loving home to other children with special needs.”
For the Millers of Silverdale, Wash., Valentine’s Day is extra special this year. For the first time in five years, their calendar is free of surgeries and hospital stays for siblings Tessa and Gabriel, who were both born with heart defects.
A complicated, changing diagnosis
The Millers’ complicated journey began in 2008, before Tessa was even born. Ariana and Chris learned that she had Down Syndrome and an atrioventricular septal defect (also known as an AV canal defect). The defect occurs when the heart doesn’t form properly before birth, leaving a hole in the middle of the upper and lower chambers.
Even while she was still pregnant, Ariana began seeing Seattle Children’s Heart Center team. Soon after Tessa’s birth, she met Terry Chun, MD, who has cared for Tessa since she was just a few days old.
“This family has been incredibly resilient,” Chun says. “Even before Tessa was born they’d gotten the news that she had heart disease, but then after she was born, it turned out that she had more complicated heart disease than was initially thought.”
Most babies with Tessa’s defect will need just one surgery when they’re between four and six months old. Instead, she has had five surgeries in less than four years – the first when she was just five months old.
As the 2013 to 2015 state budget moves toward approval this year, immunology researchers and clinicians at Seattle Children’s will be following it as closely as many of us followed last Sunday’s Super Bowl.
They will be cheering for one small line item deep inside the document: A provision to ensure every baby born in Washington is screened at birth for severe combined immunodeficiency (SCID), a rare condition that makes it impossible to fight off infection.
With short stories featuring a wide range of objects and characters from aliens, exploding stars to “banana slips”, patients’ imaginations came alive as they created their stop motion animation films.
To make the films each patient came up with a story idea, made their characters or objects that would be in their film and then moved them in small increments between individually photographed frames. Once the frames were played together as a continuous sequence, their animation was born.
Seven-year-old Mavrick Gabriel of Kenai, Alaska could be described as being “beyond his years.” He’s compassionate in a way that you don’t often see with young children, and he wants to educate others about his birth defect, craniofacial microsomia, and to help kids in the process.
Mavrick was born without a left ear and with a very small jaw that did not have a joint on one side. He can’t eat solid foods, has to use a feeding tube and his speech is affected. In June 2012, Gabriel and his family invited television cameras to capture a surgery—one of dozens he’s endured—that helped move him closer to having a jaw. But he doesn’t want you to feel sorry for him. “Most kids never have to go through this and I’d like to help other people with what I’m going through,” Mavrick said.
This Thursday, Jan. 31, is our daughter Emily’s 10th birthday, a time that should be filled playfully gathering with friends and giddily unwrapping presents. But Emily will never experience any of those things – she was born still.
Stillbirth is an all-too-common tragedy. In the U.S., 26,000 babies are stillborn every year – that is one baby, one family, every 21 minutes.
We were so excited to be pregnant with our first child, we never considered the possibility of a stillbirth—it was the only chapter in our pregnancy book that we skipped.
Jan. 30, 2013: Zach received a care package full of Batman goodies from Christian Bale this week, and his reaction was priceless:
Jan. 25, 2013: A young Seattle Children’s patient – and avid Batman fan – got a special surprise last week, when actor Christian Bale called him in his hospital room. 8-year-old Zach Guillot, of Dallas, Texas, is battling acute myeloid leukemia. He is currently a patient in the hospital’s Cancer and Blood Disorders Center, where he is recovering from chemotherapy in hopes of later receiving a bone marrow transplant. It will be his third transplant since he was first diagnosed in February 2010.
“Everyone knows Zach is a big Batman fan,” said Jeff, his father. “One of our friends called Christian Bale’s agent, cold-called-him from what I understand, and told him Zach’s story.”
On Jan. 18, Bale called Zach to talk about costumes, little brothers who moonlight as trusty sidekick “Robin,”and Zach’s homemade Batmobile. Zach’s parents, Julie and Jeff caught the conversation on video and shared it on YouTube.
Northwest Film Forum’s 8th annual Children’s Film Festival Seattle will be rolling out the red carpet to children and their families today through Feb. 3. It has become the largest film festival on the West Coast dedicated to this young audience, reaching more than 10,000 people during festival screenings in Seattle and a subsequent festival tour of 15 to 20 U.S. cities.
New this year, current and former patients at Seattle Children’s Hospital will have a few very special starring roles in the festival.
Lights, camera, action!
The festival will showcase more than 120 innovative, inspiring and fun films from 38 countries. Children’s is excited that five short films created by patients or featuring patients’ creative works have been selected to be shown at the festival.
December 6, 2012 | Patient Care, Patient StoriesComments Off on Cure for Pain: How physical therapy helped Pasco pre-teen get her life back
If there’s one thing 12-year-old Chloe Schmidt of Pasco, Wash., is thankful for this holiday season, it’s the absence of pain.
For her mom, Erin, it’s the Pain Rehabilitation Program at Seattle Children’s – and the physical and occupational therapists, psychologists, nurses and physicians who helped her daughter move past the pain that derailed her life earlier this year.
Chloe’s downward pain spiral started with a cat bite in January. By February, she had body aches that her pediatrician blamed on growing pains. A week later it morphed into a searing, all-over pain.
That’s when Erin scooped Chloe off the floor and rushed her to a local emergency room.
Seattle Children's complies with applicable federal and other civil rights laws and does not discriminate, exclude people or treat them differently based on race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry), age, disability, or any other status protected by applicable federal, state or local law. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.