Kim Arthur, clinical research scientist at Seattle Children’s, holds both of her preemie daughters for the first time in May 2013.
My daughter pushes my hand away abruptly and the spoonful of food goes flying. I turn to her twin to coax her to eat a spoonful of puréed lentil soup, and she promptly gags on the tiniest lump and spits it out.
Typical case of the terrible twos? No, they are 3 and a half, and they are not just your average picky eaters. They were born prematurely at 26 weeks, and after five months in the hospital they had to get surgically placed feeding tubes in their stomachs because they weren’t able to breastfeed or bottle-feed.
And here I am, three years later, doing everything in my power to coax them to eat enough food by mouth to get rid of those tubes.
I turn away and say out loud, “I can’t do this.”
It’s not the first time I’m saying these words. I either say them or think them every time I sit down for practice meals with my girls. We are supposed to practice eating four times a day in order to get them to eat enough that we can get rid of those tubes.
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Morgan Wood has been coming to Seattle Children’s since he was born — and as an adult, he continues to benefit from recreational and social skills classes at the Alyssa Burnett Adult Life Center.
He is known among both friends and providers for sharing his life mantras, which he developed to work through challenges related to living with Autism Spectrum Disorder.
Below, Morgan shares six of his mantras and other interesting insights from his life experience.
My name is Morgan Wood and I’m 26 years old. I was born very premature, weighing 729 grams, which is less than two pounds. Because of my weight and a bad infection I had at birth, they tell me I’m sort of a miracle. Read full post »
Harper Foy was diagnosed with an extremely rare skin condition at birth.
Every routine pregnancy check up had gone well. Angie Foy’s baby had a strong heartbeat, 10 fingers, 10 toes and a cute button nose. There was never any indication something was wrong. So, when the day finally arrived almost a year ago, and Foy started feeling contractions, she and her husband rushed to the hospital feeling excited.
Unfortunately, their excitement soon turned into something else: disbelief.
“We were thrown into a whirlwind,” said Angie Foy.
“I’ll forever remember that moment,” said Foy’s husband, Kevin Foy. “Everything was normal. The doctor told me to get my camera out and take a picture. And then everything just became quiet.”
The world around them stopped, right before chaos erupted. Read full post »
Keli Hansen and her family.
My first Mother’s Day was in 2004. I anticipated sleepless nights and lots of happiness around the arrival of my first son, Adam, due in early May. Instead, there were potted plants and sympathy cards and a single white rose in a blue vase after my son was stillborn just before midnight on April 24.
I’d gone in for a regular 38 week checkup, and there was no heartbeat. It’s the only vist my husband didn’t attend, since we believed what everyone had said, “Once you’re through the first trimester, everything’s fine.” I went directly from the doctor’s office to the labor and delivery floor, where I had to start the process to deliver my baby who was not alive. The medical team started to induce my labor, but then had to stop once their attention shifted to some emergency C-sections. I was left to try to sleep, while around me women were delivering their living, breathing babies. In the morning, the induction process was started again.
After Adam was born, I was reluctant to hold him. Every day, I am thankful for the nurse who encouraged me to take him in my arms. Now I wish I had taken more time with him. He is the child who made me a mother, and yet celebrating Mother’s Day was the last thing on my mind that May. Read full post »
McKinley with her twin brother.
In honor of World Kidney Day, On The Pulse shares the inspirational story of 5-year-old McKinley Miller who was born with just one kidney that did not develop normally. “She’s our little miracle,” said McKinley’s mother, Jennifer Miller. “We want other people to know there’s always hope. All you have to do is look at McKinley and see what she’s overcome.”
When Jennifer Miller learned she was expecting twins she was overjoyed. Unfortunately, Miller’s joy quickly turned to uncertainty. At her 20-week ultrasound, Miller was told something was wrong with one of the babies.
“I could tell they were looking for something that wasn’t there,” said Miller. “I knew something wasn’t quite right.”
Baby McKinley was prenatally diagnosed with kidney disease and was missing one kidney. She suffered from a rare combination of complex developmental problems affecting multiple organs in her body, including her kidneys, heart and rectum.
“We chose to stay positive,” said Miller. “We were told we may lose her, but I refused to focus on that possibility. I kept focusing on having both my babies.” Read full post »
Watch little Alexis (Lexi) Melton, 7, Irish dance across a stage, or effortlessly ski down a slope, and you would never guess the hurdles she’s had to overcome in her short life.
When Lexi was born, her family didn’t know if she would survive. Her extremely rare craniofacial condition literally makes her one in a million. But her story isn’t one of heartache, it’s a story of hope.
Lisa Skylynd, Lexi’s mother, never let anything hold Lexi back, not even her complex medical condition. She always told her,
“If you want to dance, you should dance. If you want to run, you should run.”
And that’s exactly what she’s done.
“Lexi is not only alive today because of the care she received at Seattle Children’s; she’s living her life to the fullest,” added Lisa. Read full post »
Every new mom hopes to have a healthy baby who enters the world right on time. But unfortunately, deliveries don’t always go as planned, and some babies arrive too soon. Preterm birth, which according to the CDC occurs when an infant is born before 37 weeks of pregnancy, affects about one out of every 10 infants born in the U.S. each year. Approximately 50,000 of those infants are born very premature, at less than 28 weeks of gestation.
Sarly Dickinson knew there was a chance her little boy may come early due to complications she experienced during pregnancy, but she held out hope that he would make it to term. Unfortunately, David entered the world at just 25 weeks. Requiring surgical intervention for hydrocephalus, a condition where fluid builds up in the brain, he was transferred to Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) where he received care for three months. While Dickinson said 25 weeks was much too early, she was thankful David’s birth story wasn’t any scarier.
“My water broke at just 23 weeks and I was terrified because I understood the risks of having a baby that early, including the terrible reality that we may be faced with having to let him go,” Dickinson said. “I immediately went on bed rest and luckily he held out a little longer and arrived two weeks later, weighing a tiny 1 pound, 7 ounces.” Read full post »
Worldwide, preterm birth is the leading cause of death for all children under age 5, taking the lives of more than 1.1 million children every year. Now, new research utilizing the emerging field of systems biology aims to harness big data in an effort to reduce the global burden of preterm birth.
Seattle is well known as a technology hub, and big data has become an area of great focus and opportunity. Advances in technology now allow for analysis of data sets that would have been much more difficult to accomplish just 10 years ago.
The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, is announcing three new projects that will use big data to help discover the root causes of preterm birth and identify potential targets for interventions to improve pregnancy health. In this case, big data is defined as large and complex data sets generated from biological components like molecules and cells, which require computational and mathematical modeling to interpret. 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 »