The baby born with half a heart and the fight to save her
13th Sep 2023 Inspire
10 min read
When scans picked up a fatal defect in their unborn daughter's heart, this family fought off every obstacle to give her a second chance at life
It seemed so real,
thought Rob Velez about the dream he’d had the night before.
Lying in bed after waking from a long night’s sleep in his home outside London, England, he smiled as he remembered the wonderful scene. He had been holding his newborn daughter in his strong arms.
As she looked lovingly into his eyes, he was so overcome with emotion that the tough 50-year-old former US Marine had started crying. He’d never felt this much love for anyone.
Amazing, he thought as the morning sun streamed through his windows. This was more than a dream. He threw back his covers and got dressed. He had to tell his partner of four years, Zofia Fenrych, what he had learned from his dream.
Fenrych, a 40-year-old homeopathic therapist, listened as he told her about his dream. “You’re pregnant,” he said. “We’re having another baby.”
Fenrych laughed. They had a daughter, age two, and both had 16-year-old sons from previous relationships. “No way I am pregnant,” she said.
“Honey,” he said, “we are having a little girl. I saw her. And she will be beautiful!”
And to prove it, Velez zipped downstairs to the pharmacy to get a pregnancy test kit. An hour later, two red lines appeared on a Clearblue pregnancy test strip. Fenrych was indeed pregnant.
She screamed in delight and they embraced. “We’re going to have a beautiful daughter,” he said. “I know. I saw her last night.”
After a prophetic dream, Velez told Fenrych that they would have a baby daughter
A devastating diagnosis
Four months later, in February 2022, the couple went to the doctor’s office for a 16-week ultrasound. They held hands as the sonographer moved an electronic probe called a transducer over Fenrych’s abdomen. A two-dimensional image of their baby, whom they had already named Dorothea, appeared on the nearby screen.
“We saw her tiny fingers and toes and watched as baby Dorothea, my dream daughter come true, actually moved,” Velez remembers. “She was sucking her thumb. Then both of us let out a shout, as it looked like she waved at us. She was so tiny, so beautiful!”
"Dorothea had only half a heart; the rest was undeveloped"
The sonographer kept moving the transducer, then suddenly stopped. “We have a problem,” she said. She called in a paediatric expert from a hospital nearby.
An hour later, after studying the sonogram, the expert dropped a bomb. “I am so sorry,” she said. She explained that the baby had hypoplastic left heart syndrome (HLHS), a rare, often fatal, condition. Dorothea had only half a heart; the rest was undeveloped. And because of that she had little chance to survive.
“Her best advice was that we elect to, and I’ll never forget the word, ‘terminate’ the pregnancy,” says Velez, choking back a tear. “This was the moment that everything—our entire lives—changed forever.”
Keeping the faith
Even before she was born, Dorothea's family included her in all their family outings
Never. That was the response both Velez and Fenrych had when they heard the doctor’s advice to have an abortion. “ ‘Forget about it!’” I shouted at the paediatrician,” recalls Velez.
After digesting the news, Dorothea’s parents decided to enjoy every day they had with her. They took day trips to the seaside and visited nearby parks where they would walk for hours and keep up a steady conversation with their unborn baby, explaining what they were doing and seeing.
On one trip to a botanical garden, as their toddler, Batsheba, screamed with joy while she chased ducklings, Fenrych caressed her own belly and told Dorothea, “See, your sister is having so much fun.”
At home, Fenrych would play the piano, her son would play the violin and Batsheba would sing to her unborn sister.
“We wanted to include Dorothea in everything,” remembers Fenrych.
Velez, who had been stationed in England as a US Marine when he was younger and had moved back there for his job with a global financial services company in 2014, was now employed at a private equity firm that worked with healthcare startups.
"After digesting the news, Dorothea’s parents decided to enjoy every day they had with her"
He pulled every string he could to get a second opinion, only to hear the same diagnosis and the same suggested medical path: terminate the pregnancy.
Obsessed with saving his daughter’s life, Velez quit his job and devoted all his time to researching HLHS. He and Fenrych dipped into their savings to survive. He wrote countless messages to doctors, surgeons, specialists and hospitals around the world, hoping to find someone who could help.
A foetal echocardiogram at 24 weeks revealed even more bad news: in addition to HLHS, Dorothea also had a severe blockage in her heart. Their baby had only a five per cent chance of survival, Velez and Fenrych were told.
Then they found out about a complex and risky in-utero foetal operation that might repair her heart. But since no one in the UK could carry out the surgery, the couple looked elsewhere, eventually finding a paediatric surgeon in Texas who agreed to perform the procedure. But it would cost more than $4 million.
To raise the money, they started a publicity campaign, doing countless media interviews. Velez also wrote scores of letters to celebrities and, as he remembers, “every billionaire I could think of.” But they only raised about $80,000—far from what they’d need. As the days ticked by, their chances of saving their unborn baby’s life looked more and more hopeless.
A new door opens
Credit: Tilly Nelson. With time running out, Dorothea's father continued to doggedly hunt for a way to save her life
Look closer. It was in the middle of the night when Velez heard the voice in his head. He was sitting alone in his home office despairing that he’d failed his family. Am I going crazy? he thought. Now I’m hearing voices!
Look closer, the voice repeated.
“What are you talking about?” he answered aloud. “I’ve tried everything.”
Look closer to home.
Fine, thought Velez, I’ll try again. He Googled “impossible cases,” “miracle surgeon,” “UK paediatric expert” and “HLHS.” Almost immediately a link to a Facebook page about Dr Guido Michielon, a cardiothoracic surgeon, popped up in the search results.
Velez pored through the page, reading message after message from enthusiastic parents thanking Michielon for “saving our baby’s life,” “giving us hope,” “changing our lives” and more.
Even more remarkable, Velez discovered that the Italian-born surgeon was an expert in HLHS and had done more than 2,000 open-heart procedures with a special focus on neonatal surgeries.
"We will do our best. But please remember, the odds are not in our favour"
How did I miss him? Velez wondered as he wrote an email to the London-based surgeon, describing Dorothea’s issues and including medical notes and copies of her sonograms. Within hours he got a reply: “I am in Italy now but will be back this Friday. I’ve moved you to the top of my appointment list.”
Five days later, at the end of a long Skype conference call, Michielon gave the anxious parents the news they’d been praying for: “I can help you. I will operate on Dorothea after she is born and stabilised.”
He explained that he hoped to basically “rewire” and “rebuild” her heart and veins days after she was born. And, instead of costing them millions, the operation, called the Norwood Procedure, would be fully covered by the UK’s National Health Service (NHS).
Velez and Fenrych were ecstatic. But they were jolted back to reality when the surgeon warned, “A child with HLHS has a very low chance of survival. And Dorothea’s complications are even more severe than most. We will do our best. But please remember, the odds are not in our favour.”
A newborn survivor
On July 7, at London’s Royal Brompton Hospital, surrounded by a 20-strong team of medical personnel and a bank of beeping monitors, baby Dorothea was born by Caesarean section. Velez, dressed in surgical scrubs, stood alongside Fenrych and peeked over a curtain to see his newborn daughter.
“Look!” he said joyfully. “She has a full head of hair!”
The medical team rushed Dorothea into a resuscitator unit and placed an oxygen mask on her tiny face. A priest Velez had asked to come along hurriedly baptised her as she was being scanned.
As he left the operating room, Velez noticed a group of doctors looking at a screen that showed a sonogram of his new baby’s heart.
Minutes later, the chief surgeon, Dr Alain Fraissé, told Velez, “I don’t know how to explain this but, somehow, there are four or five new veins in her heart that have appeared out of nowhere.”
He explained that these veins, which no one had seen on earlier scans or MRIs, were helping drain her heart. In other words, they were keeping her alive. He sounded astonished.
Michielon came out and hugged Velez. “She is stable and she is beautiful. Congratulations!”
Fighting for her life
The mood shifted dramatically on July 12, when Velez and Fenrych met with Michielon and his team at the hospital to discuss the Norwood Procedure operation, which was scheduled for the next day.
Velez instantly sensed there was something wrong. The normally ebullient physician seemed distant and didn’t make eye contact.
A hospital administrator delivered the bad news: “We’ve decided that there is such a small chance your baby will survive the surgery that we cannot allow it to go forward.”
The room fell silent. Velez could feel his own heart beating. And if she did survive, the administrator continued, “There’s a very good chance she would suffer irreversible brain damage.”
Velez looked at Michielon for help. He was looking at the floor.
"Velez told Fenrych that he was ready to chain himself to the prime minister’s office at Downing Street if he had to"
The administrator said, “We recommend compassionate care.”
“You mean we should let her die,” said Velez curtly. “After we’ve come this far?”
“You know I want to operate, but I cannot without the support of my team,” said Michielon.
Velez’s fighting spirit kicked in and he went into what he called Marine mode. “We’re not going down like this,” he told Fenrych. “Not after all we’ve been through.”
He went home and sent blistering messages to the hospital CEO and the hospital attorney. One said, “Who are you to play God?”
Velez reached out to a well-known human rights lawyer who had a successful record fighting for NHS patients. Velez told Fenrych that he was ready to chain himself to the prime minister’s office at Downing Street if he had to.
“The pressure was on,” he says. “The US First Marine Division had landed at Royal Brompton Hospital!”
Twenty-four hours later, the hospital administrators relented. The operation would take place.
The miracle surgeon
In the face of great adversity, Dr Michielon managed to save Dorothea's life
The next morning, at 7.30am, Michielon, assisted by three paediatric cardiac surgeons and a team of nurses, began the delicate open-heart surgery that would reconstruct the right ventricle of Dorothea’s heart so that it would pump blood to both her body and her lungs without the need of the malformed left ventricle.
After Dorothea’s chest was opened, she was hooked up to a heart-lung machine that would take over for her heart and lungs while doctors operated on those organs.
Surrounded by flickering monitors and the gentle whirring of the heart-lung machine, Michielon began the intricate, precise procedure to build a new, larger aorta by joining the pulmonary artery to Dorothea’s existing aorta, which was just one millimetre wide.
"A baby’s heart is only about the size of a walnut"
This is time-consuming, painstaking work; a baby’s heart is only about the size of a walnut, and Dorothea’s veins and arteries were so tiny, “really a hair,” says Michielon. He needed to wear high-powered magnifying lenses to see as he expertly cut and sewed vessels together.
The hours dragged by as Michielon and his team performed the delicate surgery. Their last step was to install a shunt from the right ventricle to the pulmonary artery, connecting them to direct the blood flow to the lungs.
Nearly 11 hours after he and his team began, Michielon finally began to relax, as he double-checked his work that had essentially re-plumbed this newborn’s faulty heart.
By late afternoon, Michielon, exhausted and still dressed in scrubs, found the parents in the waiting room. “Looks good,” he told them, smiling broadly. “She is stabilised.” The three embraced in a celebratory hug.
A heart stopping sound
Within minutes, Velez and Fenrych were startled by the screech of emergency alarms. A team of doctors and nurses rushed into the room where Dorothea was recovering from surgery. People shouted orders. A doctor yelled, “Cardiac arrest!” The alarm kept wailing.
After a few minutes, a nurse dashed out to tell them, “Dorothea’s heart has stopped. She’s had a heart attack. We are trying to revive her.”
Ten minutes later the nurse returned with the same message.
Fifteen minutes later she came back: “We’re still doing CPR; we’re trying to get her back.”
"She was battered and bruised, but with the help of a bank of high-tech machines, she was still fighting to stay alive"
An agonising hour later, Velez and Fenrych were ushered into the ICU.
They were shocked to see their tiny daughter tethered to a dialysis machine and a life-support unit that helped her heart pump blood. Her chest was covered with dried blood and was swollen from more than an hour of CPR.
She was battered and bruised, but with the help of a bank of high-tech machines, she was still fighting to stay alive.
Velez and Fenrych reached beneath the network of tubes and lines that were keeping Dorothea alive and held her hand. When Velez felt his daughter squeeze his index finger in her tiny hand, he told her, “You are a fighter, you did it. You’re going to be okay.”
The miracle baby
For the next five weeks, Velez and Fenrych rarely left Dorothea’s side in the ICU. They talked to her, played music for her and caressed her.
On August 26, Fenrych’s birthday, doctors removed Dorothea’s breathing tube and took her off the ventilator, moving her to only light breathing support from a CPAP machine.
She would need a second open-heart operation in a few months, and doctors warned her parents that to survive that surgery, Dorothea would need to put on weight and get stronger.
She was then moved out of intensive care—and amazed hospital staff by gaining more than a kilogram in less than two months. Dorothea’s heart was working well and her oxygen levels became normal.
On September 14 she was taken off the CPAP machine and began breathing for herself.
"We sing happy birthday to Dorothea each morning, because every day with her is a miracle"
Dr Michielon performed the second surgery on her heart on November 24, and declared her prognosis excellent.
On December 21, Dorothea finally went home with her parents, just in time for Christmas. She had defied the odds and lived up to her well-earned nickname: the miracle baby.
Today, says her proud papa, she is a chubby, healthy baby who is constantly smiling and laughing. “You know, right after we found out we were having a baby girl, we named her Dorothea. That’s derived from a Greek phrase that means ‘gift of God,’ ” he explains.
Velez pauses and smiles as he watches Batsheba, now age three, snuggle up next to her baby sister on their couch. “We sing happy birthday to Dorothea each morning, because every day with her is a miracle.”
Banner credit: Zachary Monteiro
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