Fetal Health Center and NICU: Birdie and Erika’s Story

Meet Birdie

A high-risk pregnancy leads a mother to Children’s Mercy for childbirth and an unexpected career

“You’re pregnant!” In 2018, Erika and Bill Mendence were excited to find out they were expecting their first child. Once they reached the second trimester, they began to share the wonderful news. But what they weren’t expecting was that two weeks later, they’d have to tell a different story: there were new complications and uncertainty about their baby.  

What not to expect when you’re expecting

At 14 weeks into her pregnancy, Erika and Bill went in for her regular prenatal check-up. 

“We had a wonderful appointment, everything was going great,” said Erika. “Then towards the end, they did a Doppler scan…and they couldn't find a heartbeat.” 

In hopes of reducing worry for everyone, her OB/GYN decided to have an ultrasound done immediately instead of waiting until the traditional 20 weeks. Thankfully, the baby’s heartbeat was found quickly. Unfortunately, they also discovered an omphalocele, a condition in which the baby’s abdominal organs aren’t inside the abdomen, but are instead protruding outside of the belly through the belly button, in a thin sac. According to the CDC, about 1 in every 4,000 babies in the United States is born with an omphalocele. This condition can sometimes be severe, so Erika and Bill were understandably concerned. 

With so much uncertainty after this diagnosis, the doctors were certain about two things: the pregnancy needed to be closely monitored and the baby would need to be cared for in a NICU once born. So the family was referred to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy to begin care. Erika would see the maternal fetal medicine specialist at Children’s Mercy from her 16th week of pregnancy through delivery. After genetic testing indicated the baby’s omphalocele was not due to genetic factors, Erika’s doctor determined that the risks for Erika during pregnancy were low, but the baby’s were high.

“Every week we thought: is the baby going to be okay? Is the baby going to survive the pregnancy?” said Erika. “We didn’t know what was going to happen, which you can imagine is pretty horrific for a first pregnancy.”

Instead of relying on Google searches for medical information during her pregnancy, Erika decided to join a Facebook support group of parents whose children had omphaloceles. The support group was a great source of information and strength during that uncertain time.

Born into love

Because they didn’t want Erika to go into labor and possibly rupture the omphalocele sac, the doctors scheduled a C-section for 39 weeks and one day into the pregnancy. As luck would have it (depending on which parent you ask), that fell on Valentine’s Day. Bill, whose birthday sometimes falls on Thanksgiving and whose mother’s birthday is on Valentine’s Day, wanted their baby to have her own special day. Cupid would win, because lovebirds Erika and Bill welcomed their little girl, Birdie (named after her great-great grandmother), into the world on the national day of love.

As with any birth, the delivery room was full of excitement, but knowing the baby was high-risk heightened the intensity for everyone. At the Fetal Health Center, however, newborns receive immediate specialized care from the moment they’re born, so the family knew they were in good hands.

“Birdie was born with a giant omphalocele, which can mean issues with feeding and the intestines that you would expect, but they can also cause a lot of issues with breathing,” recalled neonatologist Karishma Rao, MD, who was a Neonatology fellow at the time of Birdie’s birth. “Some infants with a giant omphalocele may require a tracheostomy and ventilator for long term support.”

As soon as Birdie made her first sound, Erika knew that she would need some additional support — and she was right. During pregnancy, she learned that the children of families in her Facebook omphalocele support group either had breathing issues, feeding issues or both. Shortly after birth in the Fetal Health Center, Birdie was intubated to help her breathe then taken to the NICU, where she would begin her nearly seven-month stay at Children’s Mercy. 

“We have a big heart for the Fetal Health Center here at Children’s Mercy,” said Erika. “We received fantastic care and support throughout the entire pregnancy.”

Peaks and valleys

 

“Birdie was feisty from the beginning,” recalls Dr. Rao.

 While Birdie was lively and determined, she would need every ounce of courage to brave the journey ahead. The first two months of her life were spent working to support her breathing. From different masks to trying continuous positive airway pressure (CPAP), her care team realized that her lungs were underdeveloped and unable to support her as needed, so at two months old, Birdie got her trach and ventilator. 

During pregnancy, the family found out that Birdie also had a ventricular septal defect (VSD), which is a hole in the heart. They hoped that Birdie’s would close up after birth, which happens for some, but unfortunately that wasn’t the case. So at just 4 months old, little Birdie had open heart surgery to repair it.

The next few months were a true family affair, spent with Birdie recovering in the NICU and her parents preparing to go home to a new life as first-time parents of a baby with a tracheostomy. Erika was able to be by Birdie’s side all day, every day, during her NICU stay. Bill worked 24-hour shifts as a paramedic, so when he was off work, he was right there, too. Birdie also enjoyed frequent visits from her grandparents, Grammy and Grampy, who would visit on their lunch breaks and in the evenings. 

“I just remember both Mom and Dad being so present, engaged and in tune with Birdie’s needs the entire time she was there,” recalled Dr. Rao. “And Birdie, who just had the most beautiful eyes, was so alert and attentive, despite everything she had going on. Every time you passed by her bedside, you just lit up!” 

The next adventure

In 2019, Birdie made it home after nearly seven months in the Children’s Mercy NICU. The family was settling in, learning all the new things that had to happen to take care of their baby. In addition to all the usual baby care, the family had to reorganize their home to make sure they could safely care for Birdie. All of this took a toll on the parents. 

Erika had learned a lot during Birdie’s NICU stay and also formed a special bond with Tiffany Gladdis, PsyD, Clinical Neonatal Psychologist. Dr. Gladdis did narrative therapy with Erika, where she asked her some questions and let her share her story. This helped Erika focus on when she felt proud or concerned, but the greatest gift was the opportunity to share her experience. 

Inspired by her work with Dr. Gladdis, Erika decided to create, host and produce a NICU storytelling podcast. She wanted to give families the opportunity to tell their story, which was so fulfilling for her. And she would lead the talk with one question: “Where does your story begin?” This opened the dialogue and allowed other families to share and reflect. She would also start talking to the families about what it was like to have another child after such an experience.

Erika also felt a strong need to give back and help families at Children’s Mercy, so she began volunteering. She started with the NICU Patient Family Advisory Council (PFAC) as a Family Support volunteer and she also taught trauma-informed yoga for caregivers through the Kreamer Resource Center for Families. While doing this, she learned about opportunities to be on staff at Children’s Mercy and the Patient and Family Engagement (PFE) team caught her eye. The PFE team is unique, as it is made up of parents, on staff, whose child has received care at Children’s Mercy. Most team members work throughout the hospital, but some work in specific areas. Erika works specifically with the NICU.

What else could life throw at us?

2019 had been a whirlwind for the Mendence family but they had no idea there was more to come in 2020 — on top of the pandemic that was just around the corner. 

During her time in the NICU, Birdie was having some symptoms with her liver that would come and go. But when Birdie was around 18 months old, her parents started noticing some yellowing of her skin and other indications that her liver wasn’t healthy. While navigating through a worldwide pandemic, Birdie would get a liver transplant in 2021 when she was two years old.

Sonny days

Today, things are sunny and bright for the Mendence family. Birdie is almost 6 years old, recently started kindergarten and is doing great! 

“Birdie is really a special kid. She’s bright, she can read, she loves hanging out with her friends and is obsessed with maps, for whatever reason,” said Erika. “And she is just the best big sister.”

Four years after Birdie was born, Erika and Bill decided to try again for another baby and Birdie’s brother, Santino, nicknamed “Sonny,” came into the world. It was an easy pregnancy, nothing like the first one, and it was healing for the parents. Sonny and Birdie both have their primary care providers at the Children's Mercy Beacon Clinic, which cares for patients with complex health conditions as well as their siblings.

Erika loves now being a Children’s Mercy employee, sharing her vast, real-life experiences with current NICU and trach families. Some of her favorite days are working at special events like the NICU Reunion at the annual Children’s Mercy Dream Big Day, a day to see how former patients have grown. Birdie enjoys coming as well and being reunited with the team members that cared for her.

“I’m a meaning-making person, in that whatever I do, I find meaning in it,” said Erika. “I've never felt more suited for a job in my life. I'm right where I'm supposed to be and I have all the knowledge and tools to do the work and also to grow in the work. My heart is here.”