Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.
This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.
“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).
Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. Read full post »
CICU nurse Sherri Kruzner-Rowe with her former patient, Karissa Gossett.
When Seattle Children’s Family Advisory Council opened nominations for the 2015 Family Choice Awards, patients and families responded with more than 200 names – each one belonging to a staff or faculty member who made an indelible impression for all the right reasons.
With great difficulty, the advisory council whittled down the nominations to select four recipients who live and breathe a commitment to family-centered care: Danielle Giles, Sherri Kruzner-Rowe, Jo Ristow and Dr. Kendra Smith. In addition, the graduating residents selected one of their peers – Dr. Amanda Stinger – for the family-centered resident award.
Read on to learn more about the 2015 Family Choice Award winners and what family-centered care means to each of them. Read full post »
Aaden Adams with his parents, Cheree and Andrew Adams
Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.
“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”
“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”
Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.
“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »
The NEST Program provides hands-on, simulation-based training in neonatal intubation and resuscitation techniques for pediatric providers across the region.
All new parents hope for a healthy delivery, but in the rare instance that an unexpected medical issue arises as baby enters the world, it’s crucial that the newborn delivery and transport care teams are well versed in performing neonatal emergency procedures.
Breathing difficulties are some of the most frequent unexpected medical issues in newborns, especially in preemies. According to Seattle Children’s neonatologist, Dr. Taylor Sawyer, about 10% of all babies born in the U.S. will need breathing assistance in the delivery room, and about 1 in 1,000 will need to be intubated, or have a tube urgently inserted in their airway to push air into their lungs. Fortunately, these emergency situations are uncommon. However, this infrequency can leave many delivery providers and transport teams in the community, who only intubate a newborn about once a year, feeling out of practice and a bit uneasy when required to perform this complex task.
This is why Seattle Children’s and the University of Washington have launched the Neonatal Education and Simulation-based Training (NEST) Program, which offers hands-on, simulation-based training in neonatal intubation and resuscitation techniques for pediatricians, nurses and transport team members across the region. Read full post »
Juliette (right), who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children’s lactation consultants.
Everything went perfectly when Amanda Erickson’s first baby was born. Bennet arrived right on time on March 11, 2012, healthy and eager to nurse.
Exactly two years later – on March 11, 2014 – Bennet’s sister, Juliette, came into the world. This time, says Erickson, “it was an adventure birth.”
In other words, nothing went as planned.
Juliette had been diagnosed before birth with a serious heart problem, and Erickson planned to deliver at the University of Washington Medical Center so her baby could get to Seattle Children’s right away.
“We knew she wouldn’t be able to breathe on her own,” says Amanda. Read full post »
The Marvin family
Imagine living every day of your life waiting for your child to have their next seizure. This is often the reality for parents of children with intractable epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is plagued by uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be.
This scenario is something with which James Marvin and his wife Joana are all too familiar. When their daughter, Charlotte, was diagnosed with epilepsy after having her first seizure at just 14 months old, this became their family’s world.
“We called it ‘the antagonist,’” said Marvin. “Charlotte would usually have a seizure every couple of days, but any time she was stressed, tired or sick, the antagonist would come out. It was so difficult to live our lives just waiting for the other shoe to drop, and there was no end in sight.”
That was, until five years later when they traveled 3,000 miles from their home in Virginia, to seek treatment at Seattle Children’s Hospital that held the promise of ending Charlotte’s seizures, hopefully for good.
Read full post »
Jacob Smith, 16, from Mukilteo, Wash.
Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.
“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.” Read full post »
New experiences can be scary for children, and a hospital stay is probably one of the scariest new experiences for any child and their family. When a child or teen is scheduled for an overnight or extended hospital stay, parents can be confronted with not only the needs of their child, but also the anxiety it may create for the entire family.
Social workers can help families with many aspects of a hospital stay, from providing emotional support to more tangible needs like insurance and financial assistance. Ashley Peter, a social worker in Seattle Children’s Craniofacial Center, has found that many parents come in with similar questions, but are unsure of where to turn to first.
“As social workers, our goal is to make sure families know there is support available for a variety of needs, regardless of their situation,” said Peter. “We realize that being in the hospital is a lot for families to adjust to, which is why we are here to guide them through every step of the way.” Read full post »
Being the mother of a pediatric stroke survivor, I am thrilled that this month marks Pediatric Stroke Awareness Month in Washington state. As a nation, we have supported efforts of increasing awareness of stroke in general, however, pediatric stroke has received little awareness or research to date. Here we share our story in hopes of increasing awareness among the community, advocating for more resources and support for children and their families who have been impacted by stroke, and to provide hope to families starting out on this journey that our children can overcome vast obstacles.
Addison Hyatt survived a pediatric stroke at birth
Contrary to what most people believe, stroke is a potential risk for everyone, including children and teens. Stroke occurs at the highest rate in the first year of life, and is most common between the 28th week of pregnancy up until one month after birth. Approximately one in 1,600 to 4,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in 11 out of 100,000 kids and teens. I share this information not to create alarm, but rather to spread awareness. Pediatric stroke is often thought of as extremely rare; sadly it is not. I know far too well that it’s real, and we encourage other parents to understand its signs, symptoms and treatment options. Read full post »
In recent years, the diagnosis of abusive head trauma (AHT), historically referred to as shaken baby syndrome, has been the focus of great debate in court rooms and media headlines across the country. The debate has focused on a few key questions: Does AHT really exist? Can shaking really cause brain injury or death in infants?
“Having people believe that abusive head trauma doesn’t exist and that shaking an infant is harmless is a public health danger,” said Dr. Carole Jenny, a child abuse physician in Seattle Children’s Protection Program and at Harborview Medical Center, who has more than 30 years of child protection experience. “Parents and caregivers need to be aware that abusive head trauma as a result of shaking is a real thing that can happen – it does happen – and it has devastating, lifelong or fatal consequences.”
Dr. Christopher Greeley, who is a child abuse expert and associate professor at the University of Texas Medical School at Houston, said that it comes down to this: “Would you shake your newborn baby?” Read full post »