Four-month-old Emily Daly is thriving after undergoing a very complex surgical procedure while she was still partly in the womb, writes Claire O'Connell
Miraculous - that's how Caroline Daly describes the story of her four-month-old daughter, Emily, who underwent a life-saving operation while she was still partly in the womb.
In only the second successful procedure of its kind in the State, medical teams partially delivered Emily by Caesarean section at Dublin's Holles Street hospital and operated on her airway while she was still attached to the umbilical cord.
Daly and her husband Michael first realised something could be wrong at a scan 32 weeks into the pregnancy in St Munchin's Hospital in Limerick. "It was just a routine scan, and our eldest boy Colin had come along to see the baby on the telly," says Daly.
"The girl doing the scan spotted that there was an abnormality in the baby's neck. It looked to be filled with fluid and it was the size of the baby's head again."
They were referred to Holles Street and Temple Street hospitals for further tests, but the outlook was bleak, says Daly.
"The growth was getting bigger and it was likely that the baby wasn't going to survive," she says. "But as long as the baby was inside me she was fine because I was breathing for her."
Emily had cystic hygroma, a rare congenital swelling of the lymph vessels, and the cysts were compressing her airway, explains Ms Helena Rowley, a consultant paediatric ear, nose and throat surgeon at Temple Street.
Emily's cysts would have led to potentially fatal breathing problems at birth, so they decided to do an "ex utero intrapartum treatment" (Exit).
"It's a treatment on an infant when the head and neck are delivered by a C-section and while the baby is attached to the umbilical cord," explains Rowley, who also carried out the country's first successful Exit procedure at the Rotunda last January.
So at 38 weeks Daly went to Holles Street where obstetrician Prof Fionnuala McAuliffe and her team delivered Emily's head and neck by C-section while mother and baby were under deep anaesthesia. And because Emily was still attached to the umbilical cord her mother acted as a life-support system, providing her with oxygen as the paediatric team widened the baby's airway.
"You have about 45 minutes to do the procedure and there are up to 40 people in the room," says Rowley, who ensured that Daly saw Emily before she was transferred to Temple Street.
"Then myself and my anaethesist Dr Kevin Carson went with the baby in the ambulance. It was emotional to be going back with a critically ill baby but feeling that we had probably managed to save her, which was fantastic."
Daly also recalls the relief of seeing her baby after the procedure. "All I saw was her head of black hair but I was happy once she was alive. And I had only found out then that she was a girl," she says. I saw her properly the next evening in Temple Street. I went over in a wheelchair. I was hardly able to stand but you find the strength from somewhere. I was a bit afraid to look at her at first but she was beautiful, gorgeous."
Emily needed surgery a few weeks later to remove the cysts, and that was also a rollercoaster, explains Daly. "We didn't want to leave but we went for a walk down O'Connell Street. We were gone an hour and we got a call to come straight back.
"Emily's heart rate and blood pressure had dropped and it looked like she wouldn't survive the operation. But they carried on, and I said she must be still alive. Then Helena Rowley came up and said Emily had survived. They took the growth off and she looked absolutely fantastic."
After three months Emily moved to Limerick Regional Hospital, and she is now home with her brothers Colin and Conor. "We're happy to have her back with the boys and we're starting to become a family again," says Daly.
Emily currently has a tracheostomy, or breathing tube, which requires 24-hour care, says Daly. "But she's perfectly normal, there's nothing else wrong with her. She's four months now and meeting the milestones, she's grabbing at things and nearly turning over onto her tummy, holding her head well."
The success of the two Exit procedures here to date could pave the way for more, says Rowley.
"There have been a lot of advances recently in the prenatal diagnosis, in particular in prenatal MRI scanning, and with two successful Exit procedures in two maternity hospitals we might expect an increased number of them coming through, and hopefully they would do well."
And while Emily will need further treatment, her family is delighted to have her back home and thriving.
"We could not fault the care that she got in the hospitals and we never gave up on the baby," says Daly. "I always said she will live, you have to keep the faith."