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.
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Zofia, 40 and Rob, her partner, knew her baby had no chance of survival and they began a global search for medical assistance.
They found a Texan surgeon who would operate for £2million.
The couple found a surgeon in Britain through Facebook and were able to get it done for free.
However, Dorothea was so sick when she was born that the hospital cancelled the operation.
Only after a human rights lawyer intervened, doctors agreed that it could be done.
The youngster had been in various hospitals before finally being transferred to the Royal Brompton Hospital, South West London.
Cradling Dorothea in his arms at the hospital, Rob, 50, told Central Recorder 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.
“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. After all that happened, I now understand why they did this.
“Most babies would not survive what Dorothea went through. Sometimes it felt almost like torture. But I 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.”
The worst case a 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.
The condition affects one percent of all congenital heart diseases in newborns in the UK, and is diagnosed in 1 in 4000 babies.
A child born to HLHS infants has a 5-10% chance of survival. Parents are advised to end the pregnancy and to consider palliative treatment for the child.
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 found a doctor who was an expert on HLHS through Facebook. And he was in London, just 45 miles from our home.”
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Dr Guido Michielon responded to Rob and Zofia straight away and agreed to perform surgery after Dorothea’s birth. She was 6lb and born via C-section on July 7, at 37 weeks.
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 the surgeon was allowed to proceed with the surgery.
On July 14, Dorothea was able to undergo the 12-hour operation. It was performed by Dr Michielon along with three nurses assistants.
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 required 65 minutes of CPR. The next 24 hours were spent holding just 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.”
Dorothea will be in hospital for now until she has another operation at six-months of age. As her heart grows, Dorothea may also remain there.
When she turns three, she will be able go home to have more surgery. This should allow her to live with us until adulthood.
Rob and Zofia quit their jobs to take care of their daughter. Rob said: “She is so chubby, with little chubby cheeks and more than one chin. She loves to motor and has amazing motor skills. ‘tummy time’.
“She has such piercing, blue-grey eyes and a full head of brown hair.
“She smiles and laughs at everyone, isn’t attached to any machines or tubes anymore, she looks like any other 3-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.
“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.”
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