The Heart Warriors

As Holt’s China team works to find families for a growing number of children with complex heart disease, a partnership develops with Little Hearts Medical — a groundbreaking, U.S.-based organization of cardiac surgeons, cardiologists and adoptive families who are working to ensure children receive the medical interventions they need early on, and while still in China.

In June 2014, when hopeful adoptive parents Heather and Vince Preston received a referral from Holt’s China program, they were prepared for a child with a heart condition. They had expressed their openness to this special need when applying, and they knew the need was great.

But neither of them were medical doctors. And they knew that “heart condition” could mean a broad spectrum of things — from a minor hole that would close on its own to a chronic, life-threatening disease that would require round-the-clock care. Before accepting the referral, they needed more information. And they needed advice from someone experienced — someone who knew what she was talking about. Someone like Andrea.

But as Heather soon discovered, there’s no one quite “like” Andrea.

“At the time, I was excited to speak with her,” Heather says of Andrea, who often mentors Holt families who are considering an adoption of a child with complex heart disease (CHD). “But I did not realize how valuable this conversation would be.”

A mother of six with five children adopted through Holt — four of whom have CHD — Andrea also serves as executive director of Little Hearts Medical, an organization that brings life-saving cardiac care to orphaned children and children from poor families in China. Needless to say, she’s a busy woman. But not too busy to take Heather’s call.

While the Prestons barreled down the highway en route to a family camping trip, Andrea sat on the phone with Heather for two straight hours — answering their questions, from a parent’s perspective, about the referral they received from Holt. Although the child’s medical file had already been assessed by a pediatric cardiologist, the information contained a lot of medical jargon and confusing information. “Throughout the two-hour drive, Andrea talked with us about [our soon-to-be son] Max’s particular flavor of CHD based upon the file review,” Heather says.

Andrea understood the medical jargon, which she explained in great detail and in layman’s terms. “[She explained] what my son’s heart looked like on the inside,” Heather says. “And how it could affect him.”

Max had right atrial isomerism, transposition of the great arteries, ASD/VSD, situs inversus and asplenia. “When he was being made in utero, his body tried to copy himself,” Heather explains. “So he technically has two right atria and a single ventricle. His liver and stomach are flip-flopped and he has no spleen.”

Andrea did not sugarcoat his condition. “[She] was very upfront with the fact that [the cardiologist determined] he may have a shorter lifespan,” Heather says. “While the information was hard to hear and was a little bit frightening, Andrea’s calm demeanor and positive attitude gave us the confidence to feel we would be able to parent our son effectively, even though it was a bit scary.”

After their two-hour phone call with Andrea — and the official file review by a pediatric cardiologist — Heather and Vince decided to accept the referral for the boy who would become their son, Max. A year later, they traveled to China to bring him home.

“Because of Andrea, we have the most loving, sweet, adorable son who is getting the health care he needs,” Heather says. “We are so grateful for Andrea and the work that she does.”

Andrea is not a medical doctor or nurse. She has never worked in a cardiac care unit and before five years ago, she probably could not have defined situs inversus or atrial isomerism. But as Beth Smith, Holt’s director of services for the China program, says, “Andrea has lived it.”

After adopting their first child from China — an infant daughter with no known health conditions — Andrea and her husband, Eric, met another family, the Lees, whose adoption of an 8-year-old girl with CHD inspired them to open their hearts to a child with a heart condition. In 2010, they brought home Tristan, whose VSD and ASD had already undergone a full repair in China. But when they got to China, they realized something was amiss because of how Tristan was breathing. “When we got him home, Tristan was diagnosed with severe pulmonary hypertension, which can be fatal,” Andrea says. Although Tristan was given a grim prognosis, Mike and Tanya Lee encouraged Andrea and Eric to transfer his care to a pediatric cardiologist specializing in pulmonary hypertension at Doernbecher Children’s Hospital in Portland, Oregon.

Today, Andrea says, Tristan is doing fantastic. But their lives would never be the same.

“That was a huge shock to us and it propelled us into the world of complex CHD,” Andrea says of Tristan’s diagnosis. “We learned a tremendous amount about heart disease and its complexity and navigating insurance — just tons and tons. And after that whole process, we thought we had tried so hard to avoid being in this situation, but you know what? We’re okay. We love our son and we’re a lot stronger.”

When they decided to adopt again, they were again drawn to heart disease. “We felt we could go into it knowing we could take on more,” Andrea says. That’s when they welcomed Bryce into their family. The following year, they adopted Scarlett. And then Rini.

With each child, they learned a bit more and became a bit more confident about what they could take on.

If Tristan had heart disease, Bryce — who came home in 2011 — had complex heart disease. Scarlett had “super complex heart disease.” And Rini had “super duper duper complex heart disease.”

Each of their children came home with critical medical care needs that could not be addressed in China  — a systemic problem that Mike and Tanya Lee first recognized a few years prior when they traveled to bring home their youngest and third child with CHD, a boy who was in such poor condition that he had actually transferred to hospice care. During their adoption trip to Beijing, the Lees met the talented heart surgeon who had cared for their son, but who despite his best efforts could not provide surgical intervention on his heart.

Although their son was on his deathbed in China when the Lees came to bring him home, once in the U.S., he was able to receive the vital cardiac surgery he needed. Hearing this extraordinary news, the Chinese surgeon expressed an ardent desire to learn from the Lees’ doctors in the U.S. — Dr. Laurie Armsby of OHSU Doernbecher Children’s Hospital and Dr. Stephen Langley, formerly of OHSU Doernbecher and now Chief of Cardio-Thoracic Surgery at St. Joseph’s Children’s Hospital in Tampa, Florida.

After introducing Dr. Langley and Dr. Armsby to their son’s surgeon in China, the Lees founded Little Hearts Medical — a nonprofit, entirely volunteer-based organization dedicated to saving the lives of orphaned children and children from impoverished families in China while advancing cardiac orphan care through collaboration between surgeons and cardiologists in China and the U.S.

In October and November 2012, and again in February 2013, Dr. Langley, Dr. Armsby and a team of medical professionals traveled to China to work with local heart surgeons — providing training in the latest heart surgery techniques as well as free cardiac care to orphaned and vulnerable children.

In 2014, the Lees approached Andrea to lead the organization as executive director. Not only did Andrea intimately understand the challenges facing children with CHD in China, she also brought another unique skill set. “I think their selection of me was because I have been active in the adoption community ever since we started our [first] adoption with MeiLi,” Andrea says. “I’ve been active in volunteering in social media and real life… I had more of a pulse in what was going on in the adoption side.”

While Little Hearts Medical focused on improving care for children in China, Andrea filled in another key piece of the puzzle: finding families for orphaned and abandoned children.

Clearly, Andrea recognized that she and her husband could only adopt so many children. But one thing she could do was advocate for other children waiting for families — a passion that began after they adopted Bryce and grew in part from a particularly heart-wrenching moment in China with the director of the orphanage where they adopted Rini. As they were leaving with their ailing daughter, he chased after the Olsons — asking them to adopt more children with CHD, as they had so many more “just like her.” During many months at Seattle Children’s Hospital with Rini as she underwent and recovered from a heart transplant, Andrea would check Holt’s waiting child photolisting to learn about the children with CHD and how she could help advocate for them.

“A lot of advocates specialize in kids with limb differences, etc., but CHD is what I know,” she says. “That’s where my heart is.”

By advocating for children on Holt’s photolisting, an informal collaboration between Holt and Andrea — and ultimately Little Hearts Medical — began to grow.

“When I came on [with Little Hearts Medical], one of the services I wanted to provide for agencies and families was cardiac file review free of charge,” Andrea says. “When [agencies] receive a referral, they can contact us and we have a team of pediatric cardiologists that will do file reviews.”

This step is often critical to Holt’s ability to find a family for a child.

“Files [from China] often say just ‘CHD,’ but there’s no more info, such as whether a child needs surgery,” explains Jessica Zeeb, Holt’s child match coordinator for the China program. “There are families out there willing to take on a child with CHD, but they need to include more information in the child’s file to share with the family… I love that about Little Hearts Medical. I can ask, ‘Can I refer this child to this family, or is it more than they’re open to?”

For many children with CHD to be matched with a family, Andrea and Jessica concur that all it often takes is a thorough review of their medical file.

“Year to date, we’re nearing 100 cardiac file assessments,” Andrea says of Little Hearts Medical. “We’re helping to get kids matched faster, especially now since agencies have such a shorter amount of time that they have a file.” In other words, when children go from one agency photolisting to another, Little Hearts Medical can keep the files on hand so if a family requests information, Andrea can say, ‘Hey, we’ve already assessed this child’s file.’ “One morning, three families requested an assessment of a child we already assessed weeks earlier,” Andrea says. “So they didn’t have to wait weeks to get the info they needed.”

While an objective review by Little Hearts Medical’s team of doctors is essential, families often also want to hear other families’ subjective experience of raising a child with CHD. Andrea holds that puzzle piece as well. “For families considering a child or if they’re already matched with a child,” she says, “I love to mentor and talk to them about aspects of living with a child with CHD or choosing the best healthcare center for a child. I share things that we learned on our journey, such as what questions to ask — questions I never would have thought to ask doctors in the beginning.”

The Prestons are not the first family Andrea has mentored who ultimately chose to adopt a child with CHD. “[Andrea] didn’t convince us to move forward with our adoption of our son, God did that, but she helped us move forward with the information we needed to make the best choices for his care,” explains Holt adoptive mom Megan Vos, who contacted Andrea after receiving a referral for a boy with ‘chronic heart disease.’ “Our sweet Abram — 4 years old and home six months — just had catheterization last week.”

Today, Abram, Max and many other children with CHD now have the loving families they need and deserve — in part because of Little Hearts Medical. “I really do believe there is a family for every kid,” Andrea says. “You just have to find the family.”

While Little Hearts Medical has had a tremendous impact on finding the right families for children with CHD in the U.S., at the heart of their mission is their work in China helping children get the vital cardiac care they need — long before adoption is a consideration. “Our main mission is training of Chinese cardiac physicians and surgeons,” Andrea is quick to emphasize. At present, Little Hearts Medical is partnering with two hospitals in Beijing — providing training to cardiac surgeons and nurses in techniques such as heart catheterization. “We’re hoping to help train the Chinese physicians so that more children can receive treatment,” Andrea explains. “Because so much comes down to funding, and heart cath is much more achievable financially — and early intervention can stabilize the child, increase their quality of life, and increase their chances of being adopted.”

To help advance their cause in China, Holt has also teamed up with Little Hearts Medical — in particular, securing for them an audience at the China Center for Children’s Welfare and Adoption (CCCWA). “Holt arranged for us to sit down with the director of the CCCWA and give a presentation,” Andrea says. During this presentation in May — which was also attended by Ann and Ed Bartlinski, Holt adoptive parents and members of the Little Hearts Medical team — they expressed how vitally important it is to provide early interventions in the healthcare of children with CHD.

And this past September, Little Hearts Medical experienced a huge success when they returned to China — this time to the National Children’s Welfare Institutes Therapy Training Conference in Shanghai, where they gave a presentation to an audience of China’s orphanage directors, orphanage caregivers, CCCWA and Civil Affairs officials. “One of the great things that’s come from the trip to Shanghai is that we are now being contacted directly by orphanages,” Andrea says. With this new partnership, orphanages can directly send Little Hearts Medical the medical files of children in their care. “Orphanages are sending us files of children that aren’t even paper-ready — infants —asking if we can you have a U.S. cardiologist look at this and asking when to seek out care for this child,” Andrea explains. Of the last four files Little Hearts Medical assessed, the orphanages have arranged surgeries for the children.

“I could have cried when I read that,” Andrea says, her voice bubbling with excitement. “Because that is exactly what we’re trying to do.”

From the beginning, the team that formed Little Hearts Medical has devoted their services to improving cardiac care for orphaned and abandoned children living in China’s social welfare system. But they recognize — and hope to address — a much broader need, encompassing all children who need advanced cardiac care. “It’s very critical and important for us that the public know our mission is not just helping orphaned children, but helping all children,” she says. “It’s about family preservation. We will help all children who need help, both orphaned children and those of impoverished families who cannot afford care for their children — because that’s what leads to abandonment.”

For Andrea, this is a very personal issue. “I have no doubt that I have my four cardiac children because their families could not afford to pay for their care,” she says. “That is something that on a moral level, as an organization, we want to address. The struggles that these families face are incredible.”

Because Little Hearts Medical is currently partnering with the CCCWA, they have not yet directly served children who are living with their birth families in China. “But indirectly, I would yes, we are, because our medical teams go to Beijing United and BaYi Children’s Hospital and provide training to their surgeons and cardiologists,” Andrea explains. “So surgeons that our organization has shared knowledge with are now in a position to continue to help those they serve in new ways.”

It’s a huge problem and we’re not delusional, Andrea says. But Little Hearts Medical continues to grow and expand and experience “little victories” in advancing cardiac care for children in China. “We were excited about being invited by the CCCWA to directly partner with them, and having been invited to Shanghai to do a presentation and just talk about what these children mean to us and to the families who adopted them,” she says. “We’re starting the process — throwing that pebble in the pond.”

A pebble that has created a big ripple. “In early November,” Andrea say, “Little Hearts Medical was invited to enter into a 3 to 5-year partnership agreement with the CCCWA.”

Three years have passed since their first medical mission trip. And in that time, Little Hearts Medical has grown significantly. They now receive inquiries from doctors all over the U.S. who want to participate by doing file reviews or being a part of medical teams. They continue to develop new partnerships and speaking opportunities in China. And they are laying the groundwork to open a medical foster home — the “Love You More” heart home — to exclusively care for children with CHD in China, including dorms for families to be with their children. It’s a far-reaching goal, but one they are hopeful they can ultimately realize.

“Everything that we’re doing now is also helping to raise awareness and increase visibility of our organization,” Andrea says. “Our hope and dream is that it will open.”

With Andrea at the helm, Little Hearts Medical has big ambitions. But for each of the little hearts they serve, their impact is as big as China itself. “We can’t imagine a life without our heart warrior, although I know it used to be considerably quieter, ” says Holt mom Megan Vos. “This was the special need that we were least open to and God has used it to break our hearts for the little heart warriors who still wait. He has done the same with Andrea and she is paving the way to a better future and medical intervention for these precious kiddos. It is beautiful work being done by my beautiful friend.”

 Robin Munro | Managing Editor

Andrea recently traveled to China as part of Holt’s ambassador trip to Beijing! Click here to read Andrea’s post about two boys with congenital heart disease (CHD) who are waiting to find their permanent, loving families.