How Seattle Children’s Turned One Family’s Devastation Into Hope

When Cassie Fannin was 19 weeks pregnant with her first baby, she couldn’t wait for the ultrasound to reveal her child’s gender. During the appointment, she and her husband Michael were delighted to see their beautiful baby wobble around on the ultrasound screen.

Fannin asked the technician, “Is it a boy or a girl?”

But the technician’s previously cheerful expression now suggested something was wrong. “I need to check with the doctor,” said the technician as he hurried out of the room.

Moments later, a doctor gave Fannin and her husband the devastating news that changed their lives.

“I left this appointment to a completely different person”

Fannin’s ultrasound revealed she had a girl, but it also showed the baby had a congenital diaphragmatic hernia (CDH) – a hole in the left side of her diaphragm through which the stomach, intestines, and part of her liver slipped into her chest cavity and prevented her left lung from fully developing.

“They told us that CDH has a 50% survival rate,” said Fannin. “To say it was a shock is an understatement. We were no longer excited when we found out we had a girl, we were completely devastated in seconds. I left this appointment to a completely different person. “

The doctor offered very little information about CDH, but urged the Fannins to decide if they wanted to continue their pregnancy.

“It was pretty bleak,” said Fannin. “I remember the doctor telling us that if she survived, her quality of life would be very poor. We didn’t know what to do. We were totally lost. “

Find answers

Summer, when she was only a day old holding her father’s hand in the Seattle ICU. Three days later, she had an operation to repair her hernia.

At this point, the Fannins were referred to the Seattle Prenatal Diagnosis and Treatment Program and met Dr. Kim Riehle, a senior surgeon on the program.

While this is a rare condition, Seattle child providers have cared for hundreds of infants with CDH, and our pediatric surgery team is one of the most experienced in the nation. With such unique expertise, Seattle Children’s has one of the highest survival rates in the nation for children born with CDH.

When Fannin and her husband were with Riehle, they finally found the answers they were desperately looking for.

Riehle described in detail what a CDH diagnosis would mean for her daughter – whom they called Summer.

She recommended that Fannin give birth at the University of Washington Medical Center and then move Summer to the Seattle Infantile Intensive Care Unit before undergoing surgery to close her hernia.

Most importantly, Riehle said that Summer’s chances of survival were 85%.

“She gave us hope,” said Fannin. “Michael and I had been married for less than a year and in many ways I still felt like a kid. I wasn’t sure what I was doing. Kim was one of the first to make me feel like a mother. She gave me confidence in my instincts, strong in my beliefs and reminded me that this was my child and that I could handle absolutely anything for the summer. “

The hardest part

Riehle holds 9 month old summer. “Babies can go through a lot,” she said. “CDH babies are among the sick in the hospital, but once they and their families have got through the difficult newborn period, they should have a good life. We expect them to get better and better over time. “

Fannin gave birth to summer on January 23, 2015 at 39 weeks. Once she was born, Summer was taken away for resuscitation and intubation, but Fannin saw her briefly before going to Seattle Children’s.

“When I could finally touch her, she opened her eyes and wrapped her little fingers around mine,” Fannin remembers. “We knew each other immediately. She was absolutely perfect. “

For the first days of her life, Summer was cared for at the NICU for children in Seattle. She had pulmonary hypertension and difficulty maintaining normal oxygen and carbon dioxide levels. After four days, Riehle said she was strong enough for an operation.

“The hardest part was seeing her go back to the operating room,” recalls Fannin. “Kim gave us all the information she could, but I still knew some CDH babies didn’t make it.”

During the operation in the summer, the stomach, intestines and liver were placed in the abdomen. Riehle then covered the hole in the summer’s diaphragm with a synthetic plaster to keep the two body cavities separate.

“We received updates throughout the operation, such as” We have completed our preparation, “” We are going to start now, “” We are in the middle of the operation, “recalls Fannin.” That really helped us all of our fears calm down. “

Fortunately, Summer’s operation was a success. After six weeks in the hospital, she was finally able to go home.

“We called the Seattle children’s home for six long weeks,” said Fannin. “We became a family there. In many ways, leaving was bittersweet. We left behind a life we ​​began, expert care and friends we made within the walls. But moving on to live the life we ​​had planned all along was like nothing I can put into words. We were nervous and excited and ready to be a family of three.

Beyond surgical expertise

Summer is now a happy, energetic 6 year old. She still has health issues with her CDH, but Cassie says the CDH team continues to take excellent care of her daughter.

While Summer’s hernia was being repaired, she still needed extensive follow-up care from various specialists in the Seattle Children’s CDH program – a multidisciplinary team that cares for CDH patients before birth, during their surgery, and through puberty.

CDH is a complex disease that affects many interconnected organ systems: the lungs, heart, gastrointestinal tract, brain and others, ”said Dr. Rebecca Stark, CDH program director. “Having a team of specialists working together has led to better patient outcomes.”

Fannin says the follow-up care Summer receives is one of the main reasons she recommends Seattle Children’s to other families diagnosed with CDH.

“Despite everything she’s been through, Summer loves going to Seattle Children’s,” said Fannin. “She loves her doctors and everyone who helped create this wonderful space for children like her.”

A bright future

Summer still faces health problems caused by her CDH, but Fannin says she is fine.

Now, 6 years old, Summer loves her little brother, goes to virtual kindergarten and will soon try to play soccer despite the limited function of her left lung.

“Summer is an energetic and compassionate person,” said Fannin. “I can’t imagine our life without her. It would be easy to wish away some of the hard times, but I don’t know that I would. She is just as amazing as she is and makes me proud every day. “