Onora and Mom Reading

Kristen reads to Onora.

This week, in honor of Mother’s Day, we’re sharing stories about mothers who have found hope through difficult diagnosis and became advocates for other parents and families.

Kristen Moriarty of Missoula, Mont., was 22 weeks into her pregnancy with her daughter, Onora, when a routine visit to their OB-GYN turned into shock and concern. Onora was diagnosed with omphalocele, a rare condition in which the intestines or other organs grow outside of the baby’s body and the umbilical cord forms a sac around them.

Moriarty and her husband had a big decision to make – where would they go to receive care for their little girl? Montana wasn’t an option, so they packed up all their belongings and moved.

“We relocated to Washington when I was eight months pregnant,” said Moriarty. “For us, it was a no-brainer to go to Seattle Children’s Hospital” which has the lowest reported morbidity and mortality rates for surgeries to correct giant omphalocele in children.

Moriarty planned to deliver Onora at the University of Washington Medical Center (UWMC), and then have her transferred after delivery to Seattle Children’s.

“We met with Seattle Children’s fetal echo team. We met with Seattle Children’s surgeons. Everyone wanted as much information about her as possible before she was born. We met a lot of people, and we had a lot of questions,” said Moriarty. “Unfortunately, it was really a game of wait and see. There aren’t that many cases of omphalocele and there are so many variables that are unknown until the baby is born, so it was hard to know what to expect. I just had to remind myself to be patient and keep going.”

Special babies, special care

Seattle Children’s sees about 10 babies with omphalocele a year. Because of the special care these babies need, it is best to be treated at a hospital that has a high level neonatal intensive care unit (NICU), and surgeons and neonatologists with a lot of experience in taking care of these babies. Seattle Children’s was the first hospital in Washington to be designated as a Level IV NICU, which offers the highest level of care for babies, equipped to care for the tiniest and most critically ill newborns.

“Some omphaloceles are small and not a big issue from a surgical standpoint,” said Dr. Daniel Ledbetter, an attending surgeon in the Division of Pediatric General and Thoracic Surgery at Seattle Children’s. “Some, however, are big and are harder to fix. Onora had a big omphalacele. We knew it was going to be hard, but we also knew we could help the family through it. We have the most experience with treating omphalocele in the Pacific Northwest. Often, babies born with omphalocele also have other problems, including heart disease, syndromes and chromosomal problems. We’re lucky at Seattle Children’s to have specialists that are equipped to treat not just the omphalocele, but other conditions that present as well, which makes for better care to our patients.”

Delivery, transfer and a waiting game

Baby in NICU

Onora grabs her mother’s finger before being transferred to Seattle Children’s.

Onora was born at UWMC by scheduled cesarean section on April 11, 2013.

Moriarty only had a few seconds with her baby girl before she was whisked away to the NICU to stabilize her before the transfer to Seattle Children’s.

“As they wheeled me to recovery, they stopped by the NICU so I could see my little girl,” said Moriarty. “I reached my hand through the hole in her isolette and she grabbed my finger. That was our first meeting. It was like she was telling me it would be okay.”

It was an emotional goodbye. Moriarty’s husband stayed with Onora, traveling with her to Seattle Children’s, while Moriarty was taken to her room at UWMC to recover.

“Her transfer was incredibly smooth,” said Moriarty. “They had a NICU bed waiting for her impending arrival. I couldn’t see her which was hard, but I knew she was in good hands. I needed to heal myself first, before I could focus all my energy on her.”

Putting the pieces together

Moriarty was discharged and at her daughter’s bedside in no time.

“She was attached to so many wires and tubes and I didn’t know how to touch her,” said Moriarty. “I just wanted to hold her. I’m so thankful for our nurse. She advocated not only for Onora, but for us as well. That day, she was in my arms for the first time. We felt so cared for.”

Mom with Onora in Hospital

Onora and Kristen at Seattle Children’s.

At Seattle Children’s, there are two main options for treatment for omphalocele: immediate surgery or an option called “paint and wait.” For Onora, the care team decided the “paint and wait” option was best.

“Onora’s lungs were small, which compounded the complexity of her condition,” said Ledbetter. “The omphalacele was one issue, but when you add the small lungs to the picture, it was a much more difficult situation. Because of her lung issues and the size of the omphalalcele, we decided to do the ‘paint and wait’ method. It might seem that delaying the surgery and not fixing this seeming fragile abdominal wall would be a bad idea. And if not done right, it can go wrong. But we’ve been doing the same method for almost 30 years. We were early adopters to it and have rarely had a complication with any of our patients.”

The sac covering the omphalocele was “painted” with an antibiotic cream. Over time, Onora’s skin grew over the sac. When Onora was stable, doctors wrapped the sac with an elastic bandage, slowly pushing the bulge back into her belly.

Onora stayed at Seattle Children’s for 103 days. Her bulge slowly got smaller and smaller. At three months old, it was about the size of a tennis ball. Moriarty and her husband were elated to bring Onora home, but Onora’s condition presented unique problems.

“Everything needed to be modified,” said Moriarty. “Car seats, baby swings, the way we held her, it needed to be altered because of her omphalocele. It was difficult at first.”

When Onora was 15 months old, she had surgery to close the hole in her abdomen, securing all her organs safely back in her body.

Life after omphalocele

Family PhotoOnora carries a feeding pump in order to receive daily nutrients, and she still makes trips to Seattle Children’s to see a pulmonary specialist, gastroenterologist and cardiologist for follow up care, but she has a bright future, Ledbetter said.

“We hope that her lungs will get better as she grows. They may always be small, but my hope for her is that she will continue to grow and improve,” said Ledbetter. “She should be able to be or do anything she wants when she grows up.”

Moriarty, who is expecting a healthy baby sister for Onora in August, said the important thing for parents to remember is that no matter what is facing them, they can get through it.

“There are still moments I ask myself ‘why me’?” said Moriarty. “But they quickly come and go. My daughter is my hero. Through all the pokes and prods she’s been through, she still smiles and dances. I kept telling myself, ‘if she can get through this then so can I.’ I want other families to know that they can get through it, too. Life goes on. These kiddos are amazing and so worth it. ”

Resources: