Former NICU Parent Helps Other Families Navigate A Stressful Time

Most people working in a Newborn Intensive Care Unit have some type of advanced medical degree. But one employee at The Children’s Hospital at Providence in Anchorage has a very different set of qualifications. Ginny Shaffer spent more than three months in the NICU as a parent, with her daughter who was born at 23 weeks. Now she helps other parents through one of the most stressful times of their lives as a Parent Navigator.

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A mini chalk board outside Emily Bressler’s NICU room playfully charts her ‘escape attempts’ from the hospital. Her mom Liz says she’s come close to going home at least a dozen times in the last four months.

“Someone would come into the room and they’d say well you could be outta here in two weeks, she’s doing good right now,” Bressler says. “And then at the end of two weeks, something would happen, I called them her medical temper tantrums and it was just enough to keep her here.”

Emily had her first medical temper tantrum the day after she was born- a hearty eight pounds, one ounce- in Fairbanks. She started vomiting, couldn’t poop and was medevaced to the Providence NICU in Anchorage. Emily was diagnosed with Hirschsprung’s Disease, which affects the colon. She needed surgery- three in all- to be able to pass stool.

Bressler’s husband had to stay home in Fairbanks, caring for the couple’s three other young kids.

“I kind off keep my sanity by cracking jokes. And we make the best signs,” Bressler says. “Emily has one that says ‘kiss my little red wagon’, and ‘if you wake me, you take me.’ And it’s great to have that lightness.”

The other half of that ‘we’ Bressler is talking about is NICU Parent Navigator Ginny Shaffer.

“If I can make her smile with a sign, then we’re going to make as many signs as possible,” Shaffer says.

Shaffer has also helped Bressler find a spot for her espresso machine, a vital piece of equipment when your home is a hospital room. And then there’s the tougher stuff. Shaffer is someone Bressler can talk to when Emily has surgery or a setback. She also helps Bressler advocate for Emily’s unique care needs with doctors.

Shaffer says every family needs help in different ways.

“I want to walk into a room and I want somebody to see that there’s somebody that’s going to help them and it’s just their needs I’m looking to support,” Shaffer says.

Ten years ago, Shaffer was the one who needed support. She was 23 weeks pregnant with twins- a boy and a girl, when she felt funny and went to the hospital. Her tiny babies (both weighed less than 1.5 pounds) were born five hours later. Her son Bryson experienced seizures, brain bleeds and problems with internal organs. When he was 45 days old, Shaffer and her husband made the difficult decision to remove life support.

The day after Bryson died, a nurse suggested a first bath for their daughter, Holland.

“And they got out this little bitty pink hospital basin, this little tub that was too big for her and this heat lamp and we got this really great photo,” Shaffer remembers. “The nurse said, ‘how many people does it take to give a two pound baby a bath?’ And we’re all smiling- ‘five!’ And that was a really pivotal moment in our life because I didn’t really know how to go forward.”

Holland spent 99 days in the NICU. After that experience, Shaffer was glad to be home, but she missed the daily connections with hospital staff and other NICU families. When Holland was two years old, the NICU Parent Navigator job opened up and it seemed like a natural fit for Shaffer, even though her background is in real estate, not healthcare.

Eight years later, Shaffer’s office- with huge glass windows, is the first thing you see walking into the unit. It’s filled with stuffed animals, infant clothes and a bowl of chocolate to entice parents to sit down and talk. Shaffer also works to get families connecting with each other:

“We try and get creative with some of our offerings,” Shaffer says. “We’ve done National Fried Chicken Day- a quirky celebration, but it kind of creates a giggle and then people are curious, ‘the NICU’s celebrating National Fried Chicken Day? Let’s go see what it’s about.’ And connections are made.”

Another piece of Shaffer’s job is advocating for families with hospital administrators. She helped design the new NICU that opened two years ago to be as parent- and baby- friendly as possible. Right now, she’s pushing for a more relaxed visitors policy. No visitors are allowed at shift change, when confidential information is exchanged. It’s a holdover from the days when the unit was open, with no private rooms.

“If my neighbor is here and she’s my best friend and she can help me or get me a tissue or a drink, then why not let her stay? You can shut my door and give me some privacy and then I won’t overhear the confidential exchange of information that happens at shift change,” Shaffer says.

But one of best job perks for Shaffer is celebrating family milestones. And a recent day brings a big one. A parade of doctors and nurse are stopping by Emily Bressler’s room to say goodbye and take pictures. After 127 days in the NICU, she is finally making her escape.

Bressler is thrilled to be going home to her husband and kids, but sad too- to say goodbye to the support network of Shaffer and all the NICU staff. She says it’s a little like trading one family for another.