- Rob Velez and Zofia Fenrych's unborn child urgently needs in-utero
cardiac surgery . - Without the complex operation, their doctor said, the fetus has a 10-20% chance of survival.
Zofia Fenrych was delighted when she saw her unborn baby for the very first time at a routine ultrasound during her 16th week of
"She was sucking her thumb and moving around," the 40-year-old told Insider. Her partner, Rob Velez, 49, could barely contain his excitement as they looked at the screen together and saw they were expecting a second daughter.
The radiographer had been chatty – but suddenly went silent. According to Fenyrch, she examined the baby's
It took an hour for a specialist to arrive. Fenrych, who lives 30 miles south of London in the UK, said: "It went from this happy moment of seeing her for the first time to this abyss where we wondered what the issue might be."
The consultant told the couple that the child – whom they have named Dorothea – had hypoplastic left heart syndrome, a condition where the left side of the organ is chronically under-developed and frequently described as "missing." Without a number of highly specialized surgeries, the chances of survival are slim.
The mother-to-be said she was "pushed" by a doctor to have a termination. But she and her partner are determined to see the pregnancy through.
Fenrych said the doctor described the defect as "terrible," and that she pushed for termination. "She said it as if was such an easy thing - but we'd just seen our baby playing around in my belly. We had love for her. It was like, 'how could you suggest that straight away?'"
They visited a specialist fetal cardiologist two days later. He confirmed the diagnosis, and drew a diagram of Dorothea's heart on a piece of paper to explain the challenges. Fenrych said the physician warned them that continuing the pregnancy would mean "a lifestyle change."
Dorothea would need surgery around three days after birth to rebuild her heart and veins, another operation three to six months later, and a third at the age of three, the consultant explained. He said that Dorothea would likely need a heart transplant when she reached her teens. As for life expectancy, he noted in his records that patients with the same condition as Dorothea had a 60% chance of survival rate at the age of five.
But Velez and Fenrych, who follow the Catholic faith, insisted that a termination was out of the question.
Fenrych asked the doctor whether their daughter would be able to have a normal childhood. "This was the most important thing to me," she said. His answer was "yes."
Fenrych told Insider that Velez, a partner in a start-up for healthcare funding, is "a natural investigator." He spent days researching hypoplastic left heart syndrome online and found a few success stories about kids who were born with it. The survivors included an accomplished 17-year-old ballerina, who had not yet received an organ transplant in 2019. "She was inspiring and gave us hope," Fenrych said.
Velez said doctors told them the non-genetic condition was "a total fluke," that happened at conception. They have not told their 2-year-old about the issue. Fenrych, a homeopath, said: "Dorothea will start kicking and she'll give her kisses and sing songs."
8 weeks later, doctors dealt harsher news: Dorothea needs in-utero surgery to survive, and it can only be done in the US
Fenrych had a series of check-ups as the weeks went by. But, on April 5, when she was 24 weeks pregnant, a fetal echocardiogram indicated a serious complication.
There was a blockage in Dorothea's heart that was creating an overflow into her lungs. The doctors said that clearing the blockage could only be only attempted in-utero.
The critical operation, known as a fetal atrial septostomy, had to be completed between weeks 28 and 32 of gestation. Without the intervention, Dorothea has a 10-20% chance of reaching the age of five, the medical experts wrote in their report.
If the delicate surgery is performed, her chance of life would be increased to 87%, the doctors said.
However, it is is not available in the UK. "We felt robbed of our hope," Fenrych told Insider.
But it has not been completely stolen away. The parents had a consultation with Dr. Shaine Morris, a leading fetal heart surgeon at
The in-utero surgery is performed with a needle inserted through the mother's belly and uterus, into the baby's heart
In a YouTube video describing the process of fetal atrial septostomy, Morris said that a balloon or stent is placed in the heart of the unborn child — inserted through the mother's belly.
"These babies cannot push blood through their left ventricle. So they depend on a hole in the top chambers of their heart to get blood circulating," Morris said, adding that, in some serious cases, the entry way becomes blocked.
"We offer a procedure to open a hole in the top between the top chambers of the heart."
Fenrych, who is currently 27 weeks pregnant has less than six weeks to undergo the procedure before Dorothea's lungs become too damaged for the treatment to be effective, according to her doctor.
The total cost of the in-utero surgery and the two operations after Dorothea's birth is around £2.5 million ($3.2 million). "Dorothea is our daughter and we will do anything and everything possible to save her life," adding, "so we will fight on," Velez told Insider.
They are backed by the UK children's charity, Tree of Hope. The organization helps families raise money for kids' medical treatments not covered by the country's National
"Our daughter's case has moved a lot of hearts in this world," Fenrych said. "She hasn't been born into it yet, but people have shown so much kindness."
She added: "All the love and support we've received are part of Dorothea's miracle."