Neonatology

When Cassie Fannin and her husband arrived at her 19-week ultrasound, the newly married couple was excited to learn more about their child.  However, the first-time parents’ joy quickly turned to uncertainty when the ultrasound showed their baby’s stomach in her chest due to a life-threatening condition.

Fannin learned that her daughter, Summer, would be born with a congenital diaphragmatic hernia (CDH). Summer had a hole in the left side of her diaphragm that allowed her stomach, intestines and a portion of her liver to slip through into her chest cavity. This prevented her left lung from developing normally.

“To say it was a shock is an understatement,” said Fannin. “We went from being ecstatic about finding out we were having a girl to absolutely devastated in a matter of seconds. I left that day a completely different person. My sadness slowly turned into anger and resentment as I thought, ‘Why us? Why our baby?’”

Doctors referred the family to Seattle Children’s Prenatal Diagnosis and Treatment Program since Fannin’s baby would need surgery after birth, if she survived. The couple met Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s, when Fannin was about 22 weeks along.

“My husband and I were completely lost and overwhelmed,” said Fannin. “Dr. Riehle helped ease our troubled minds during a really uncertain time. My feelings of bitterness and sorrow slowly started to melt away as I came to terms with the diagnosis and the realization that we were no different than anyone else getting a life-changing diagnosis, and I just focused on my excitement to meet her.” Read full post »

Garrett Smith survived six weeks on life support in Seattle Children’s neonatal intensive care unit (NICU). Photo courtesy of Arlene Chambers Photography.

From the moment he made his entrance into the world, Garrett Smith struggled to breathe.

“We longed for that first cry as he was placed upon his momma’s chest,” said Kevin Smith, Garrett’s dad. “Unfortunately, we didn’t get to hear that cry. Instead, we saw Garrett gasping for air and making quiet whimpers.”

As doctors raced to get Garrett the air he desperately needed, they first transferred him to the neonatal intensive care unit (NICU) at the hospital where he was born. When his condition continued to deteriorate, they transferred him to a higher level of care at Swedish First Hill. Less than 24 hours later, the Smiths learned he would need yet another transfer, and faced the scariest decision they ever had to make as parents. Read full post »

In 2009, during Laurina Barker’s 20-week ultrasound, she and her husband Ryan received news that no expecting parents want to hear.

“The technician turned to me and said something looked different and that they would have my doctor call me,” said Barker.

A couple of days later, the Barkers would learn their baby had congenital diaphragmatic hernia (CDH), a rare birth defect where a baby’s diaphragm does not form completely. This leaves a hole between the abdomen and chest allowing their organs, most often their intestines and liver, to slip through the hole and up into the chest.

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Rapid exome sequencing (rES), a blood test that can quickly detect genetic abnormalities, is helping obtain timely genetic diagnoses for critically ill children at Seattle Children’s.

A newborn boy was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU) earlier this year with arthrogryposis — a condition where an infant cannot move, their joints becoming frozen in place. When geneticist Dr. Jimmy Bennett met the infant, he was on a respirator and could only move his eyes.

“We didn’t know the cause of the arthrogryposis and could not tell the parents much about their son’s prognosis — whether he would ever come off the ventilator or if he would be intellectually disabled,” Bennett said. “With so little information, it was difficult to decide how to proceed.”

This family had a previous pregnancy that was similarly affected. Bennett believed the cause might be genetic and recommended rapid exome sequencing (rES) — a blood test that can quickly detect genetic abnormalities.

Less than a week later, the test identified a specific condition that led providers to administer an appropriate therapy. Before long, the child was moving.

“Never in a million years would we have tried this therapy without the genetic test results,” Bennett said. “Two weeks later, the patient was off the ventilator and moving all four limbs. It was like a miracle.” Read full post »

From left right: Twin sisters Freya and Sabina Sturges reunited after Sabina needed an unexpected heart surgery just days after birth.

Leigh Sturges recalls the day she and her husband, Zach Sturges, learned they were having twins. Seven weeks into their first pregnancy, the Bozeman, Montana, family entered a state of happy shock.

“We couldn’t believe it when heard two heart beats on the ultrasound,” she said. “We were realistic about the challenges ahead, deciding it could only make us stronger.”

At the time, they had no idea how soon one of those beating hearts would test their strength. It was only days after delivery when doctors detected a congenital heart condition in one twin, leading the Sturgeses to Seattle Children’s Heart Center for an unexpected heart surgery.   Read full post »

Oliver bounced back from overwhelming odds with an amazing recovery. His family is now looking forward to its first Christmas with him.

Brandi Harrington seized the first opportunity she had to touch her newborn son minutes before he was taken by ambulance to Seattle Children’s Neonatal Intensive Care Unit (NICU). She and her husband, Tyler Harrington, were told Oliver had a 1% chance of surviving.

Propped up in a hospital bed following an emergency cesarean delivery seven weeks before her due date, Brandi saw Oliver for the first time. Tubes and wires connected all but one part of Oliver’s little, swollen body to machines that supported and monitored his breathing, heart rate and oxygen levels.

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Grayson, wearing his black and white “Chucks,” weighed 1 pound when he was born. He overcame several life-threatening conditions while in the Seattle Children’s NICU and is now back home with is parents in Idaho.

For Leslie and Jeremy Barnett, Grayson’s black and white Converse Chuck Taylors represent a happy ending to a tough first chapter of life for their son, who weighed just 1 pound when he was born 18 weeks premature last November.

It took eight months and overcoming tremendous adversity for Grayson to grow into the tiny shoes he received the day before his 117-day stay in the Seattle Children’s neonatal intensive care unit ended.

“We were told that Grayson had this Mt. Everest of health challenges to climb,” Leslie Barnett said, recalling a conversation with Seattle Children’s and University of Washington neonatologist Dr. Maneesh Batra when her son was a few days old.

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The story of John Kahan and his wife, Heather, losing their son Aaron to SIDS 13 years ago inspired his colleagues at Microsoft to develop a data analysis tool for SIDS research, which they have donated to Seattle Children’s Research Institute. (Photo by Scott Eklund/Red Box Pictures)

John Kahan manages a team of renowned Microsoft data scientists who are changing how society can use data effectively, from deciding when to plant crops to creating predictive business models.

But when he’s not at work, Kahan commits his time to a personal mission: Raising awareness about Sudden Infant Death Syndrome (SIDS) and fundraising for research. John and Heather Kahan lost their baby boy, Aaron, to SIDS shortly after his birth 13 years ago.

When Kahan’s data science team learned about Aaron, they volunteered to apply Microsoft technology to SIDS data and donate the company’s emerging tech tools to Seattle Children’s researchers who study SIDS.

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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 »