Our miracle daughter was born with half a heart and given zero chance of survival but now three months on she’s thriving
MIRACLE three-month-old baby Dorothea Fenrych-Velez was born with only half a working heart — yet after a truly amazing battle for survival she is now thriving.
When her mum Zofia had her 16-week scan she was told that unborn Dorothea’s condition — hypo-plastic left heart syndrome, a birth defect — was so severe that she should terminate the pregnancy.
Knowing her baby had zero chance of survival without expert help Zofia, 40, and her partner Rob, refused to give up and began a worldwide search for medical help.
They found a Texan surgeon who would operate for £2million.
Then, via Facebook, the couple discovered a surgeon in Britain who would do it for free.
But when baby Dorothea was born she was so sick that the hospital scheduled for the procedure cancelled the op.
READ MORE SUN EXCLUSIVES
Doctors only agreed it could go ahead after a human rights lawyer stepped in.
The youngster has been under the care of several hospitals and the operation was finally conducted at the Royal Brompton Hospital in South West London.
Cradling Dorothea in his arms at the hospital, Rob, 50, told The Sun on Sunday: “We knew the odds were against us.
“The condition means the left-hand side of the heart is missing and that’s the side that does all the work, the right side is the coach potato.
Most read in The Sun
“We were told Dorothea couldn’t survive and that the expensive, complex surgery to rewire the right-hand side of the heart, so it can do the job of the left, was too risky.
“But there was no way I was ever going to give up on my little girl and let her go. Dorothea is our miracle.
“For a long time I had been upset with doctors, angry they tried to stop surgery. But now, after all that has happened, I understand why they did that.
“Most babies would not survive what Dorothea went through. Many times it all felt too much, almost torture. But I always knew my daughter would fight.
“In the seven weeks that Dorothea spent in the intensive care unit I saw many children not make it with much lesser conditions. We were lucky, we had a miracle.”
One of the worst cases doctor had ever seen
Rob, managing director of a healthcare company, and Zofia, who works in homeopathy, were thrilled when they found out she was pregnant — then devastated after they were told their baby had HLHS, the most severe type of congenital heart defect.
One in 4,000 babies a year in the UK are diagnosed with the condition, which accounts for one per cent of all congenital heart disorders in newborns.
An infant with HLHS is said to have only a five to ten per cent chance of survival, and parents are advised to terminate the pregnancy or consider palliative care for the child after its birth.
The NHS is unable to operate before birth so the couple, from the village of Forest Row, East Sussex, who also have a two-year-old daughter Bathsheba, found the surgeon in Texas and began an appeal to cover the cost of Dorothea’s treatment.
Rob said: “I was reaching out to the likes of actor Sylvester Stallone and billionaires to help us, but I wasn’t getting anywhere.
“We reached £45,000 and knew we would never get to our target.
“Then we stumbled across a doctor on Facebook who was an expert in HLHS. And he was in London, just 45 miles from our home.”
Dr Guido Michielon responded to Rob and Zofia straight away and agreed to perform surgery after Dorothea’s birth. She was born by C-section at 37 weeks on July 7 this year, weighing 6lb.
Addressing the attempt to cancel his daughter’s vital operation, Rob said: “Her condition was deteriorating so rapidly we were losing her, so we contacted a human rights lawyer, Yogi Amin.”
The lawyer intervened and it was then decided that the surgery would go ahead.
Dorothea underwent the 12-hour operation, performed by skilled heart surgeon Dr Michielon, along with three assistants and a team of nurses, on July 14.
Rob said: “We were called when she came out of the operation to say she was well but we had only been with her four or five minutes when she started to go into cardiac arrest.
“She then needed 65 minutes of CPR. We spent the next 24 hours just holding one of her fingers.
“Because of the swelling from the operation, Dorothea was left with an open chest wound for five weeks.
‘We won’t stop fighting for our little girl’
“She was expected to be kept in the intensive care unit for months, but on August 30 she was moved to a high dependency unit.”
Dr Michielon said the baby’s condition was one of the worst cases he had ever seen.
He told us: “Dorothea had a unique situation in that she had other complications with her lungs and upper chambers of her heart.
“Most would have refused to do this operation, but it was a tremendous success. We have shown that the operation can be successful.”
For now, Dorothea will remain in hospital until she is due to have another operation at six months of age, as her heart grows.
She will then be able to go home and have further surgery when she is three, and that should take her up to adulthood.
Rob and Zofia have now given up work to care for their daughter. Rob said: “She is so chubby, with little chubby cheeks and more than one chin. She has great motor skills and loves ‘tummy time’.
“She has such piercing, blue-grey eyes and a full head of brown hair.
“She laughs and smiles at us and is not attached to any tubes or machines any more, she looks just like any other three-month-old baby. All the doctors and nurses who see her can’t believe she is the same baby.”
Rob added: “We know we may have more battles for that next operation and we are raising money in case we have to pay for it privately. We won’t stop fighting for our little girl.
“She has shown she is a fighter, we owe it to her.
Read More on The Sun
“We are telling our story to let others know there is hope.
“If you feel in your heart that your baby will survive, like we did, then you must keep going.”
