A baby who was said to have “no chance of survival” after being born with half a heart is now thriving having undergone successful surgery. Rob Velez, 50, and Zofia Fenrych, 41, were left heartbroken when doctors diagnosed unborn daughter Dorothea with hypoplastic left heart syndrome (HLHS) at a 16-week scan in February 2022.
HLHS is a condition in which the left side of the organ is chronically undeveloped. The parents were also told she had a blockage in her heart and would not survive without medical intervention.
However, the highly specialised procedure needed was only available in Texas, USA, and required a small fortune to perform it. Rob and Zofia set about trying to raise an eye-watering £2.5 million to cover the costs, with the surgery, which would be performed while the baby was still in the womb, increasing survival chances from 5% to 87%.
Despite the pair being unable to raise the money in time, they did manage to find a surgeon at Royal Brompton Hospital, London, willing to operate when she was born. Baby Dorothea duly arrived on June 7, and Rob claims the surgery to reconstruct her heart nearly didn't go ahead due to her survival chances being devastatingly low.
Thankfully, it did go ahead when she was seven-days-old. Although the procedure went well, the baby suffered a cardiac arrest hours after returning from surgery, with the condition lasting over an hour.
Against all odds, medics finally got her heart started again. Little Dorothea pulled through and has not looked back since, going from strength to strength.
Rob, from Forest Row, East Sussex, said: "It was devastating, we did everything we could to give her a fighting chance. I had a dream we were having a baby girl and bought the pregnancy test for Zofia - we were so excited.
"The operation nearly didn't go ahead because we were told she had no chance of survival. But now we have the most amazing little girl who is thriving - she's our miracle."
Having already had two-year-old Bathsheba together, Rob and Zofia were delighted to find out they were expecting their second child in October 2021. At the 16-week scan, excitement turned to despair after uncovering their unborn baby’s rare condition.
Homeopath Zofia revealed: "Doctors strongly urged us to terminate the pregnancy because her defect was terrible. But it was never an option for us - we fell in love with her and couldn't give up on her."
After agreeing to see the pregnancy through, they started to look for treatment options. A specialist foetal cardiologist in the UK provided hope by informing them their baby’s heart could be rebuilt at three-days-old.
However, they were given another setback when the 24-week scan revealed Dorothea also had a blockage in her heart. As a result, the only option left was to undergo an in-vitro operation that could increase her chances of survival to 87%.
They began fundraising for the £2.5 million in April 2022, but only managed £45,000 and so were desperate to find an alternative solution at 29-weeks. It was at this point that Rob reached out to Royal Brompton Hospital, with the UK’s largest heart and lung specialist medical centre agreeing to operate on the baby when she arrived.
The former US serviceman claimed: "It was the most complicated case they had ever seen. But said they would give it a go and we remained hopeful."
Zofia went into labour and Dorothea was born at Westminster and Chelsea Hospital on June 7 2022, weighing 2lb 7oz. She was whisked off to Royal Brompton to undergo surgery a week after arriving.
Rob revealed how the surgery was almost cancelled at the 11th hour: "The night before surgery, we were told the doctors were cancelling the op because she wouldn't survive. The matron said she would have organ failure and be brain dead, but we begged them to go for it.
"But we managed to get the hospital to overturn the decision, and we prayed she would pull through."
Having spent 11 hours in surgery, during which the doctors “re-wired” the veins and arteries to function from the right side of her heart, the operation proved a success. However, merely hours after returning to the ward, Dorothea suffered a cardiac arrest.
Zofia said: "Doctors came flooding in and trying to bring her back. They were doing CPR for over an hour.
"It was terrifying but somehow she clung on, and they managed to bring her back." The new-born then spent the next six weeks in intensive care with her chest cavity open and hooked-up to a ECMO machine - which works like an artificial heart to pump blood around the body.
She finally grew strong enough to come off the ventilator and move to a regular ward on August 26. Another operation on her heart will be required at six-months-old, which the parents are currently fundraising for, but, having come through the worst of it, they are hopeful for the future.
Rob added: "She looks like a healthy baby, and we can't believe how far she's come. No doctor or nurse can believe their eyes when they see her.
"Royal Brompton did what no other hospital dared and we're forever grateful. She is an absolute miracle and will change the way HLHS babies are treated."
Zofia concluded: “Seeing her here and thriving has made it all worth it. We really appreciate what we have and are so grateful to everyone here – the doctors and nurses have been so kind to us.
"Dr. Guido Michielon who operated on her was an absolute angel who has saved so many children's lives. We never lost hope and never lost faith and it shows the power of love. She fought so hard to be here with us and wants to show people to never give up.”
