When Chaya Waks’s son was born with heart problems, it was the start of a small revolution for babies with heart defects and their families

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ack in high school,when Chaya Waks took biology, she slipped out of the room when the teacher started explaining the way the human heart functions. “It had such complex anatomy — I had no interest in trying to understand it!” she says.

In an ironic twist of fate, Chaya has today evolved into a lay expert on congenital heart disease (CHD). She’s in constant contact with top pediatric cardiologists, interventionists, and heart surgeons all over the world, attends their professional conferences, and closely follows the latest trends and techniques in the management of cardiac disease. She advocates for pediatric cardiac patients, visiting hospitals throughout the US, Israel, and Europe to meet with surgeons.

Words like “cardiac catheterization,” “cyanosis,” and “pulse oximetry” trip off her tongue the way other mothers speak of laundry tricks and cookware brands, and her phone pings 24/6 as parents contact her at all hours. “Chaya doesn’t stop!” one parent says admiringly.

How does a chassidic mother from Boro Park become a CHD askanit? “I’m just a regular person!” protests Chaya. With her tasteful, understated attire and friendly, capable presence, you might mistake her for a Bais Yaakov teacher. (She started out as a volunteer fundraiser for Chush, a school for children with learning disabilities.) But the Waks family was rudely awakened to the complexities of CHD when their fourth child was born with a serious heart defect.

“That was 12 years ago, when sonogram technicians were less likely to pick up on prenatal heart issues,” Chaya explains. “When my son was born, he didn’t cry like other newborns. The doctor dismissed it, saying, ‘Oh, he was happy to be sleeping! He doesn’t want to wake up yet.’ ”

Both parents remained in denial until hospital staff realized the baby was unable to maintain a healthy level of oxygenation. At the very moment Chaya’s other children arrived to see their new brother, he was whisked off to the neonatal intensive care unit (NICU), and that was the last glimpse they would have of him for a while.

This was Chaya’s initiation into a new world of confusing medical terminology and complicated procedures. The frantic parents called a community askan, who could not offer much guidance but did suggest getting the day-old newborn transferred to Columbia Presbyterian, a hospital with an international reputation for pediatric cardiac care.

Within three days of his birth, the baby underwent his first surgery to insert a cardiac shunt. Everything happened so fast, and Chaya and her husband — heads spinning — found no one to guide them. Obliging doctors photocopied pages of medical textbooks to help explain, but most of it was Greek — or at least Latin — to them.

Where is Everybody?

While in the hospital with the baby, Chaya forged connections with fellow NICU parents and staff, learning that approximately 1 in 100 babies is born with a heart defect. If it’s so common, she thought, where is everybody? She soon learned there were actually many children in her community with heart issues.

“Some people choose to keep their child’s condition a secret for fear the stigma associated with medical issues may affect shidduchim,” she explains. “But having CHD doesn’t mean one’s children will have it, and most CHDs can be treated. I know many, many people with CHD who lead healthy lives and are parents to healthy children.”

With his first surgery behind him, Chaya’s son was scheduled for more extensive heart repair surgery at nine months of age. Chaya took him home only to find he’d lost his sucking reflex and she struggled to help him gain weight to prepare for his upcoming surgery. She remembers pulling out a phone book, looking to see if there might be someone to answer her questions or with whom she could share her concerns.

There were support groups for all sorts of medical conditions, but not CHD. She researched on her own, reading whatever material she could find on the subject. One extremely clear and helpful source was the book, The Parent’s Guide to Children’s Congenital Heart Defects, given to Chaya by her son’s pediatrician — written by his niece Gerri Freid Kramer, who had a baby with CHD.

Following the baby’s second surgery — which, to Chaya’s dismay, would not be his last — a friend recommended a shabbaton for families that have children with medical needs. Even though none of the other mothers shared her exact situation, it turned out to be a wonderfully uplifting experience. “We drew tremendous chizuk from the other parents and I dreamed of one day offering a similar retreat to CHD patients and their families,” Chaya says.

Chaya decided to start small, organizing an uplifting Chanukah party for 15 mothers in her home. The positive feedback she received encouraged her to organize a shabbaton for families of children with CHD. Eleven years ago, the newly formed Yameitz Libechu (YL Hearts, as it is known to the secular world) held its very first shabbaton with 13 families. The organization’s name comes from Tehillim 27:14: “chazak v’yameitz libecha, v’kaveh el Hashem — strengthen yourself and Hashem will instill courage in your heart, and hope in Hashem.”

YL was able to organize three subsequent successful shabbatons, each with a larger attendance than the previous, before funding for these events dried up. For the next few years, YL offered other less costly programs to support and encourage YL families. Finally, funds were secured to host another shabbaton, this one attended by 65 families. Chaya estimates that if she could raise the money to host a weekend now, well over 100 families would attend. “Our shabbatons are like a breath of fresh air for families,” she says.

One grateful mother penned this note to Chaya after attending the Shabbos getaway. “No words can describe my feelings of gratitude to this wonderful organization. Many thanks for the most inspirational Shabbos retreat. Only those who joined can truly understand. Talking to other mothers with CHD children was amazing. From caths to transplant and everything in between, you have made our hearts whole again.”

The networking and support at shabbatons are invaluable to attendees. Chaya explains, “They find themselves with other families who are going through the same ordeal, who speak the same language. We become like a family! We go to each other’s simchahs and enjoy the nachas at each child’s milestone.” Chaya’s husband is at her side in these endeavors, sharing the responsibilities of the family events, and running gatherings for YL fathers. While the organization was originally founded to service children with CHD, it’s now servicing adults too, simply because after 11 years many of those “children” have grown up.

Growing With her CHD Children

The shabbatons and other peer support activities Chaya organized soon morphed into bikur cholim opportunities as well. Yameitz Libechu arranges meals for families in the midst of a medical crisis. When families are obliged to spend Shabbos in hospitals, she’ll send — even cross-country — a lavishly decorated “Shabbos package” that includes “silver” bechers, a plastic challah tray, home-baked goods, and other Shabbos touches. That Shabbos package was “equivalent to the besamim that the Yishmaelim carried when they took Yosef to Mitzrayim,” described one recipient.

On one visit to a school-age girl hospitalized while awaiting a transplant, Chaya was dismayed by the room’s depressing decor. The girl’s mother, Fraidy, recounts, “Chaya and her volunteers brought cheerful linens printed with hearts, heart-shaped pillows, and colorful wall decorations for the room. She even had a more attractive and comfortable hospital gown custom-made for her in a way that covered her better while accommodating all the tubes and wires!”

Since then, YL routinely offers these custom gowns to other YL children. And when a hospitalized patient misses the YL Chanukah Family Gala, a private customized party comes to the patient — complete with activities ranging from plaster painting, panini making, and more.

Yameitz Libechu quickly acquired a reputation as a resource for useful information and assistance. Parents began contacting YL for help getting to the right doctor, contacting a rav familiar with CHD, or navigating this complex area of medicine. “Usually parents call in a state of panic after receiving a diagnosis,” Chaya says. “Sometimes that comes even before the birth, when they learn they have to change their obstetric care so the baby will be born in a facility that provides immediate treatment.

“Helping people feel they’re not alone is one of the most important things we do. The other important thing is making sure people get to the right place, to match up patients to the doctors best qualified to help them.”

“Chaya doesn’t take no for an answer,” Shaindy, a CHD mother, states. Another Yameitz Libechu mother, Baily, shares, “Chaya has pull everywhere. She’s very well-versed, so she can speak to doctors, and people always want to do for her because she does so much for others.”

“We’ve learned which doctors are good for which techniques,” Chaya says. “One center might excel in single ventricle hemodynamics, where there aren’t four defined chambers of the heart. Another is great at repairing valves. Some doctors are very good at going into unknown situations and coping with them.” Because every patient’s diagnosis is unique, YL only offers recommendations after a careful review of the specific situation.

Take the case of the Sterns*, whose baby was missing a main artery; in its place were small sub-arteries that were inadequate. The couple had been referred to the nearest children’s hospital, which proposed a series of operations over time to join the many branches into one. But when they talked to Yameitz Libechu, YL strongly recommended taking the baby to Stanford University Hospital in California for treatment, renowned for “unifocalization” surgeries that slice and sew small vessels into one artery in a single surgery.

Yameitz Libechu helped the Sterns schedule the surgery, negotiate insurance coverage, arrange special medical air transport for the baby, and connect with Bikur Cholim in the Palo Alto community. Chaya was in touch with the family throughout their stay in California and even express-mailed care packages to them from New York.

CHD parent Shayna gratefully acknowledges that Yameitz Libechu “held her hand” through her child’s three operations in two states. “We found out our child had an issue when I was in my seventh month,” she says. “Right away YL sent us information packets and books, and gave us a heads-up on the bumps in the road we were likely to encounter, like our child needing a feeding tube for a long time.”

Even families from Europe and Eretz Yisrael have come to the US through Yameitz Libechu. “In places where socialized medicine is practiced, doctors are more likely to throw up their hands on difficult cases,” says Chaya. “They don’t even dream of the possibility of flying the baby overseas for treatment; they have no idea that frum Jews are a kehillah in which we all help each other. But in a crisis, you have to think outside the box.”

One baby was brought from England on a medical transport that alone cost $120,000; Yameitz Libechu helped raised the funds. His doctors originally believed he wouldn’t survive but he is now an adorable four-year-old with — bli ayin hara — a functioning heart.

Insurance has become a formidable obstacle for many families. The new Affordable Care Act in the US has especially made it more difficult to get coverage. Yameitz Libechu employs an experienced patient advocate with extensive medical acumen to help families maximize coverage by securing the authorizations and approvals they need. In one hair-raising situation, a surgery had to be cancelled, only to be rescheduled 45 minutes later when the insurance company granted last-minute approval thanks to YL intervening.

Eight expert doctors from Boston and New York make up Yameitz Libechu’s medical advisory board. YL Hearts organized a conference in Boro Park in 2013 in which seven distinguished doctors, including several from Boston and California, addressed the crowd.

“Each doctor spoke about a different CHD issue, and we hosted a lavish dinner,” Chaya says. “We invited the local pediatricians our community uses, so they could meet these top cardiac surgeons and pediatric cardiologists they knew only by name. It’s so much easier to call them once you’ve met the face that goes with the name.” That’s also why Chaya makes a point to network with doctors whenever she attends pediatric cardiology conferences.

Chaya is also diligent about showing hakaras hatov to all the personnel she works with. Once, an important heart scan that should have arrived at the hospital early in the morning failed to appear. Chaya called FedEx and applied gentle pressure on the employee who took the call. “We were guaranteed that if we had the package in your terminal on time, FedEx would do their part and make sure it arrives in time. This is a matter of saving a life,” Chaya said firmly. “I believe you can do this for us.” The scans arrived later that day, and the FedEx employee received a box of chocolates and a letter of recognition to her superiors.

Heart of the Matter

Working so closely with Jewish families under stress allows Chaya to get many “up close and personal” views of family dynamics. “Hardship brings out people’s strengths,” she says. “Baruch Hashem, most people are really great.”

While it’s natural to focus on the child and his parents, Chaya has developed a special sensitivity to the siblings of the CHD child. She arranges exclusive events for siblings who can sometimes suffer from the lack of attention. Mom Shaindy says, “My kids can’t wait for the shabbatons — they love getting to know the other kids.”

Miracles large and small have become part of the YL lore. Take the two babies who each needed heart transplants and were the same size and blood type; instead of agonizing over who would be the lucky recipient when a suitable heart became available, the mothers decided to daven for each other’s baby. Incredibly, two well-matched hearts became available within two days. “One got a new heart on Taanis Esther, the other on Shushan Purim!” Chaya relates.

But not every case has a happy ending. “We recently lost a patient,” Chaya says. “It was tremendously painful for all of us when the baby didn’t make it. But we did our hishtadlus and did our best to give the parents support during and after the tragedy.”

While some heart defects can be successfully repaired with one surgery, other more complex defects require multiple procedures. Most CHD children require regular monitoring by a cardiologist throughout their lives. Certain behavioral issues, like ADHD, occur more commonly among CHD children. Heart defects can often appear as part of genetic syndromes like Down syndrome, Turner’s syndrome, Noonan syndrome, Alagille syndrome, and velocardiofacial syndrome. In these cases, heart repairs are only one aspect of a long-term treatment plan.

But the great majority of YL kids survive and thrive. Chaya’s son is now an energetic 12-year-old, and she keeps a scrapbook of Yameitz Libechu kids. “CHD is so common and mostly treatable,” Chaya emphasizes. “But for a parent, no cardiac diagnosis is minor. We try to strike the right balance between empathizing with their panic and shock, and showing them the many reasons for hope.”

*Name has been changed

Congenital Heart Disease Stats

What Is CHD?

Congenital heart disease (CHD) is a general diagnosis for a wide range of malformations of the heart and major blood vessels. (“Congenital” refers to present at birth.) There are about 40 types of malformations, and they can range from simple to complex and occur alone or in groups. “The heart is basically a plumbing and electrical system,” Chaya Waks states. “Issues can range from arrhythmias to children who need a heart transplant. Some defects require only medication, others minor treatment, still others more invasive surgery and intervention.”

How Common Is CHD?

Congenital heart defects are the most common birth defect in the world and the top cause of birth defect-related deaths. It is estimated that roughly 1 in every 100 babies is born with a heart defect, about 40,000 American children per year.

When Is CHD Diagnosed?

Some babies are diagnosed before birth or immediately after birth. But other cases will not be diagnosed until days, weeks, months, even years later. “A baby was recently brought into his pediatrician at five months for feeding issues,” Chaya relates. “But the doctor realized he had a serious heart malformation that required immediate attention!” Clues that point to CHD in a young baby include sweating or breathlessness during feedings, looking blue around the tongue or gums, and passing out.

How Serious Is CHD?

In the United States, CHD is the leading cause of infant deaths. Over half of the children born with CHD will need at least one major surgery in their lifetimes. The combined yearly surgical costs for repairing CHD top $2.2 billion. The occurrence of CHD also takes a tremendous emotional and financial toll on families.

More Information

Yameitz Libechu created an information packet for new CHD parents that includes glossaries of all the medical terms typically thrown at stunned new parents. There’s a list of diagnostic tests a child is likely to undergo, common medications, feeding issues, and advice on how to partner effectively with NICUs and medical teams. Yameitz Libechu also produces its own magazine, Rhythms, a compendium of recent medical developments, profiles of doctors, tips, inspirational writings, and poems. The organization has set up information libraries in Boro Park, Williamsburg, Monsey, and Lakewood, and will be available soon in Jerusalem and London.

(Originally featured in Family First, Issue 462)