Two community fundraisers are being held this week to benefit a young Healdsburg couple who face unmanageable hospital bills for their yet unborn son.
A blood drive in his honor runs 2-7 p.m. Monday at Healdsburg Fire Department, and a Friday fundraiser runs 6-9:30 p.m. at the Bear Republic Brewing Company, emceed by vintner Darryl Groom.
Brit Ward, an employee of Denny’s Electric, and Katie Ward, who works for upscale clothier Rete, met at Trinity Baptist Church in Healdsburg and have been married for five years. Their relief was palpable this year when Brit and Katie Ward learned they were expecting after two rounds of treatment to stimulate ovulation.
At 12 weeks, ultrasound and chromosomal tests reported normal results, but difficulties were spotted during a routine 19-week ultrasound and anatomy scan at Kaiser Permanente in Santa Rosa.
“I thought the sonographer wasn’t as talkative after the ultrasound,” said Katie, 29. She and Brit, 34, were asked to wait in the lobby to be sure the images were clear for the radiologist and, after a long wait, were told they could go home and their doctor would be in touch.
The next day their doctor called to say something was wrong with their son’s heart. When Katie called to share the news with Brit, “It was hard for her to get the words out because she was sobbing,” he said.
Further testing revealed hypoplastic left heart syndrome, a rare condition in which the left side of the heart is poorly formed and unable to support blood flow to the body. Only 2 in 10,000 infants are affected by the syndrome, which is nearly always fatal without surgery. With surgical intervention, more than 90 percent of infants with the syndrome survive a first surgery and more than 80 percent live through childhood.
The Wards were told they had to be prepared to bury their child, that “this is the time when parents may decide to terminate the pregnancy.” They didn’t consider terminating the pregnancy, saying “He’s our son, no matter what.”
Their son, named Liam, will need three surgeries to palliate his symptoms, and a heart transplant may be necessary in the future.
As Kaiser does not specialize in the rare and dangerous syndrome, they were offered care at either Stanford’s Lucile Packard Hospital in Palo Alto or at UCSF Benioff Children’s Hospital in San Francisco. They chose the most experienced surgeon, Dr. V. Mohan Reddy, who practices at UCSF.
At 36 weeks gestation, Katie will move to San Francisco until Liam is born, and Brit will visit on weekends. That hospital or apartment stay will not be covered by insurance.
When the time is right, labor will be induced and delivery managed by a large medical team, with Liam undergoing an immediate echocardiogram. Open heart surgery will follow in the first week of life, and two more surgeries in the first couple of years.
Liam will be hospitalized for at least a month after his first surgery, then will be susceptible to viruses and bacteria. Other health challenges may include pulmonary, vascular, neurological and digestive issues.
While Katie would like to be home with Liam for the holidays, Brit said he hopes the baby will stay in the hospital until the second surgery is performed so “he’ll be safe.”