Providing hope and support to “the littlest heart patients of all” and their families is what Mended Little Hearts is all about. And who better to create awareness and bring a strong voice for congenital heart defects than nurse, Ka Yang, and her daughter, Annabelle Lee. They know first-hand how important that kind of support can be.

When Yang gave birth to her daughter in November of 2009, the first-time mom was excited to take her healthy newborn home. But by the time of Annabelle’s well-child visit at 2 months old, Yang was worried. Her daughter seemed to be breathing heavily.

“I was a brand-new mom, but mother’s intuition told me Annabelle was not acting normally. Her doctor at the UC Davis clinic agreed to run some tests,” Yang said. “I am so glad she listened to me.”

A chest x-ray and an electrocardiogram (EKG) revealed that the infant was in congestive heart failure. She was whisked from the doctor’s office to UC Davis Children’s Hospital by ambulance.

“She was admitted immediately. My world became a blur,” Yang said. “I was in survival mode and so was my daughter.”

She was admitted immediately. My world became a blur. I was in survival mode and so was my daughter.”—Ka Yang, Annabelle’s mom

Compassion and expertise help girl with the broken heart

Annabelle underwent open heart surgery at UC Davis Children’s Hospital, home of the Pediatric Heart Center and the Children’s Surgery Center. Her rare defect, referred to as aortopulmonary window, is a hole between the blood vessel that feeds the heart (the aorta) and the blood vessel going to the lungs (pulmonary artery). Because of this hole, blood from the aorta rushes into the pulmonary artery, and too much blood flows through the lungs. Aortopulmonary window accounts for less than 1% of all congenital heart defects.

Annabelle also had pulmonary stenosis, where the pulmonary valve – which allows blood flow from the right ventricle to the lung  – narrows and causes the right ventricle to pump harder to get blood past the blockage. These combined defects contributed to secondary pulmonary hypertension, which happens when the pressure in the blood vessels leading from the heart to the lungs is too high.

According to UC Davis Children’s Hospital pediatric cardiothoracic surgeon, Gary Raff, children with aortopulmonary window can have a delayed diagnosis.

“This results in too much blood entering the lungs at high pressure and can result in early pulmonary vascular disease that can make surgical care challenging,” Raff said. “We work closely with our multidisciplinary pediatric pulmonary hypertension service to manage children like Annabelle.”

When the parent becomes the patient

To complicate matters, while Annabelle was recovering in the Pediatric and Cardiac Intensive Care Unit (PICU/PCICU), Yang herself suffered a medical emergency. She was taken to the Emergency Department at UC Davis Medical Center.

“We were both patients at the same time and it was so hard. I just wanted to be with my baby,” Yang said. “I would take my IV pole with me to see her. The nurses were so caring and compassionate. I was really inspired and knew we had to give back, but could not have anticipated how dramatically our lives would change.”

Another surgery, another opportunity for hearts to grow stronger

When mother and daughter were both released, Yang thought she and Annabelle were in the clear. She began to think about ways to make a difference in the community. But months later, Annabelle was having difficulty breathing once again.

“She was sweating, and I could tell her heart was working overtime,” Yang said. “I took her back in and they ran more tests. They determined that Annabelle needed another surgery.”

Annabelle’s second diagnosis was supravalvular aortic stenosis (SVAS), a heart defect that involves a narrowing of the large blood vessel that carries blood from the heart to the rest of the body. The incidence of SVAS is estimated at approximately 1 in 25,000 births.

It is important to follow patients with congenital heart defects as they grow to identify problems that develop, such as in Annabelle’s case.” —Gary Raff, pediatric cardiothoracic surgeon

At 8 months old, the little girl with the big heart had a second heart surgery to repair the diseased area with a patch made from pig tissue.

“Surgery after repair of the aortopulmonary window is not common. But in some patients, scar tissue develops. This can result in poor growth of the aorta and right pulmonary artery,” Raff said. “That’s what happened with Annabelle. It is important to follow patients with congenital heart defects as they grow to identify problems that develop, such as in Annabelle’s case.”

Hearts are mended in more ways than one

Although her recovery was challenging, the family relied on the caring staff for comfort and connected with others whose children had encountered similar cardiac issues. Yang said that the experience made a huge impact on her.

“I was so consumed with my daughter possibly dying,” Yang said. “What we went through was really hard, so it was important to have a support system.”

Yang said that between the other heart families she met through Mended Little Hearts and the team at UC Davis Children’s Hospital, she felt very well taken care of.

Now more than a decade later, both Annabelle and her mom continue that tradition of helping by providing support to other patient families through the organization that helped them when Annabelle was an infant. Yang had found her place. But working with Mended Little Hearts was just the beginning. Yang took her new mission a step further.

“What happened to Annabelle made me reassess my life. I decided to go back to school to become a nurse,” Yang said. “It’s crazy how things happened, but 12 years later, here we are.”

We love UC Davis and being involved in the community. I feel like my life has come full circle and so has Annabelle’s.” —Ka Yang

This UC Davis undergrad alumna now has a second degree from Sonoma State and works at UC Davis Health. Yang loves being part of the family-centered care she experienced as a patient herself and as a patient mom.

“We love UC Davis and being involved in the community,” Yang said. “I feel like my life has come full circle and so has Annabelle’s. She’s in middle school and has two younger brothers. We have come a long way.”

When asked about the impact Annabelle, now 13 years old, has had on her life, Yang wiped away tears as she spoke of her favorite (and only) daughter whose heart is bigger than anyone she knows.

“She inspires me every day. Annabelle is so strong, so caring,” Yang said. “I share her story with my patients and that helps them have hope. I am so grateful to help others in a meaningful way. No one should have to go through something like this alone.”