Nicole Shih Telegram & Gazette
Congenital heart defect patients, such as Saida Rizki of Shrewsbury who has experienced breathing problems and low oxygen levels throughout her life, can live a normal life, except during pregnancy when they might have difficulty giving birth.
But with the help of doctors at Massachusetts General Hospital in Boston and a charitable organization that helps support patients with CHDs — the Heartfelt Dreams Foundation in Southern New Hampshire — Rizki gave birth to her first healthy baby in February, receiving care and support from the foundation before, during and after the birth.
“I must thank the Heartfelt Dreams Foundation for all the support it provided to me and my husband, as it gave my husband a free hotel stay during my stay in the hospital,” Rizki, 31, said. “In addition, we found them caring and they always call the doctor and rush to help and we thank them again for all they have done for us.”
Rizki was born with a CHD. She can live her life normally, but before getting pregnant she had to go through surgery to close the two holes in her heart.
A leaky heart valve is the main complication Rizki faced before delivery, she said, which increased in the seventh month of her pregnancy, leading to shortness of breath and an increased heart rate.
“Because the baby can’t survive with my low oxygen and will be dangerous in my life, too,” she said.
Yet, the heart care from cardiologists at UMass Memorial Medical Center and MGH contributed to the continuation and success of the pregnancy, she said.
Additionally, with help from Heartfelt Dreams, Rizki said, she and her husband felt more at ease, allowing them to focus on pregnancy and childbirth.
“It would be difficult if we didn’t get support from them,” Rizki said. “We also received a birthday gift from them, and we had an audio and video chat with the foundation via Skype, and we were pleased to have the honor of getting to know them and thanking them for their help, both material and psychological.”
The two people behind the foundation are Eric Ankerud, president of Heartfelt Dreams, and his wife, Lori Ankerud, who is a CHD patient herself. They have a heartwarming story to tell.
What are congenital heart defects?
Congenital heart defects are the most common form of birth defects in the U.S., occurring in almost 1% of births or nearly 40,000 babies annually, according to the Centers for Disease Control and Prevention.
Also according to Mended Hearts, a nonprofit aiding heart disease patients, CHD patients face lifelong risks of health problems, such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
Thanks to advancements in medical technology and surgical techniques, medical studies show tremendous improvements in survival rates of patients with CHDs.
Lori Ankerud’s CHD journey
Ankerud, born in the late 1950s, is now living a happy life filled with family, travel and work. But that did not seem possible more than 50 years ago, when she was born with CHD and open-heart surgery was just evolving.
Ankerud is one of the lucky ones — she was one of the first infants to undergo open-heart surgery by a group of cardiologists who were experimenting with the surgery on CHD infants.
She survived and thrived.
She has visited cardiologists regularly and has been a patient of Dr. Doreen DeFaria Yeh at MGH for almost 20 years. Rizki is also Yeh’s patient.
When Eric and Lori Ankerud got married and moved to New England, they said they were looking for a cardiologist who would know her condition well.
Later, they were introduced to a cardiologist at MGH, and over the years, they learned more about Lori’s condition, including that CHD patients need heart-reconstructive surgery or other heart surgeries depending on the medical care they received as infants or as children.
In 2015, she went through surgery to rebuild her heart. She made it through and did well through rehabilitation.
Motivation to start foundation
On Thanksgiving in 2019, Eric Ankerud was approached by an anesthesiologist who told him that he’d never seen anyone who had lived as long as his wife had with a CHD. He was asked by the anesthesiologist if he would consider writing a book about Lori Ankerud’s journey battling her CHD.
Afterwards, when thinking about the next chapter in their lives, the couple said they began thinking about what they could do to help others living with a CHD.
“That kind of dawned on me that maybe that’s what we should be doing,” Eric Ankerud said, remembering coming up with the idea when he was waiting outside an operating room for his wife’s surgery.
After receiving specialized care and treatment at MGH, the Ankeruds founded Heartfelt Dreams with a mission to support CHD patients and to raise awareness among medical communities about the condition that living a fulfilling life is possible with the right medical management.
Mission of the foundation
The couple said they hope to achieve two main missions: more support for CHD patients emotionally, educationally and financially; and also for doctors and nurses who care for those patients.
The foundation arranges video conferences with patients who have high anxiety about their condition, their upcoming surgery or how the condition could affect to their family and friends.
They also provide financial assistance including free transportation either by car or plane to hospitals, hotel accommodations without charge and financial support for what insurance may not cover.
Another important element, Eric Ankerud said, is to educate the medical community on CHDs.
Through Heartfelt Dreams, they provide live webinars where doctors and nurses give presentations on topics relevant to CHDs. The webinars are available on their website and YouTube channel as well as on MGH’s social media.
“There’s a very high level of anxiety for these patients, and part of the issue is that as these patients grow up, there will be a time in their life where they’re feeling fine, and they don’t think anything is wrong, and they tend to disregard medical care,” Eric Ankerud said. “And then when they get older, their heart is in a situation where it’s sometimes too late for the doctors to do anything. So we want to try to prevent that through education.”
In addition to live webinars, written educational materials, symposiums and other medical conferences are available.
“As we talked to cardiologists around the country, we’ve recognized that there is a gap that needs to be (filled with) more learning,” Eric Ankerud said. The foundation also offers financial grants to MGH to support their cardiology fellowship program. They also receive applications from across the country for an annual nursing scholarship.
“That’s our effort — to try to connect with the doctors and nurses who will be treating the congenital heart defect patients so they’re better able to diagnose and care for patients,” Eric Ankerud said. “There are many stories that we’ve encountered not only in our own life experience but in talking to doctors and patients (on) how patients are misdiagnosed and therefore their treatment is inappropriate.”
Eric and Lori Ankerud now live a full and happy life. They have two adult children.
To learn more about support and resources for CHD patients and their families, visit heartfeltdreamsfoundation.org or the foundation’s Facebook page.
