Rob Velez and Zofia Fenrych’s unborn child urgently needs in utero heart surgery.
Without the complex operation, she only has a 10-20% chance of survival.
The baby’s family in the UK need to raise $3.2million to fund the operation as it is only available in the US.
Zofia Fenrych was overjoyed when she saw her unborn baby for the very first time during a routine ultrasound during her 16th week of pregnancy on February 5, 2022.
“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 stared at the screen together and saw they were expecting a second daughter.
The radiographer had been talkative – but suddenly became silent. According to Fenyrch, she examined the baby’s heart “for a little too long.” Then the medical professional said something was wrong.
It took an hour for a specialist to arrive. Fenrych, who lives 30 miles south of London in the UK, said: “It went from that happy moment to see her for the first time to that abyss where we wondered what could be the problem.”
The consultant told the couple that the child – whom they named Dorothea – suffered from hypoplastic left heart syndrome, a condition in which the left side of the organ is chronically underdeveloped and frequently described as “missing”. Without a number of highly specialized surgeries, the chances of survival are slim.
The mum-to-be said she was “pushed” by a doctor to have an abortion. But she and her partner are determined to see the pregnancy through.
Fenrych said the doctor described the defect as “terrible” and she pushed to quit. “She said it like it was such an easy thing – but we had just seen our baby play in my belly. We had love for her. It was like, ‘how could you suggest that right now?'”
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 doctor warned them that continuing the pregnancy would mean “a lifestyle change”.
Dorothea would need surgery about three days after birth to rebuild her heart and veins, another operation three to six months later and a third when she was three years old, the consultant explained. He said Dorothea would probably need a heart transplant when she hit 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 by age five.
But Velez and Fenrych, who follow the Catholic faith, insisted a termination was out of the question.
Fenrych asked the doctor if their daughter could have a normal childhood. “It was the most important thing for me,” she said. His answer was “yes”.
Fenrych told Insider that Velez, a healthcare funding startup partner, is “a natural seeker.” He spent days researching hypoplastic left heart syndrome online and found some success stories of children born with it. Among the survivors was an accomplished 17-year-old ballerina, who had yet to receive 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,” which occurred at conception. They did not tell their 2 year old about the problem. Fenrych, a homeopath, said: “Dorothea will start kicking and she’ll give him kisses and sing songs.”
8 weeks later, doctors announced harsher news: Dorothea needs in utero surgery to survive, and that can only be done in the United States.
Fenrych went through a series of checks over the weeks. 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 in her lungs. Doctors said removing the blockage could only be attempted in the womb.
The critical operation, known as a fetal atrial septostomy, was to be performed between weeks 28 and 32 of gestation. Without the intervention, Dorothea has a 10 to 20 percent chance of reaching age five, the medical experts wrote in their report.
If the delicate operation is performed, his chances of survival would be increased to 87%, the doctors said.
However, it is not available in the UK. “We felt robbed of our hope,” Fenrych told Insider.
But it was not completely stolen. The parents had a consultation with Dr. Shaine Morris, a leading fetal heart surgeon at Texas Children’s Hospital in Houston. She has had the operation several times. Morris liaised with the couple’s doctor in London and agreed to treat Dorothea in the United States.
In utero surgery is performed with a needle inserted through the mother’s womb and uterus, into the baby’s heart
In a YouTube video outlining the process of fetal atrial septostomy, Morris said a balloon or stent is placed in the unborn child’s heart – inserted into the mother’s womb.
“These babies can’t pass blood to their left ventricle, so they rely on a hole in the upper chambers of their heart to pump blood,” Morris said, adding that in some severe cases the pathway entrance is blocked.
“We are proposing a procedure to open a hole in the top between the upper chambers of the heart.”
According to her doctor, Fenrych, who is currently 27 weeks pregnant, has less than six weeks to undergo the procedure before Dorothea’s lungs are too damaged for the treatment to be effective.
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 everything we can to save her life,” adding, “so we will continue to fight,” Velez told Insider.
They are supported by the UK children’s charity, Tree of Hope. The organization helps families raise funds for medical treatment for children not covered by the country’s national health service. Her appeal for Dorothea has so far raised £9,700 ($12,400) against the current target of £1.6 million ($2 million).
“Our daughter’s case has touched many 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 have received is part of Dorothea’s miracle.”
Read the original Insider article