We will never forget the words, ‘your daughter ... won’t see her first birthday’
‘The only way we are getting through this is by firmly believing that our babies couldn’t stay with us for a reason’
Maria and Barry with Luca and a photograph of his big sister Lola.
Living in Trim, Co Meath, Barry is a local while Maria is originally from Madrid. Their daughter Lola was born on April 26th, 2016, after a normal pregnancy, but their lives were shattered when they were informed that she had a very rare health condition.
“Lola’s pregnancy was fairly smooth,” says Maria. “All the scans showed that she was growing normally and was healthy but when she was born, our midwife noticed that her fingers seemed to be peeling, so she was referred to the dermatology unit in Crumlin children’s hospital a few hours after birth. We thought it would be something easily fixable as she looked perfect, apart from her little fingers.”
However, it was suspected their little girl had Epidermolysis Bullosa (EB), a very rare skin blistering condition.
“It took two weeks to get the results of the biopsy to specify the type of EB she had,” recalls Barry. “Until then, Annmarie and Sharon, the EB specialist nurses showed us how to handle Lola without hurting her very fragile skin, how to change her dressings and nappy, how to apply different creams and how to feed her.
“She was doing really well and was barely blistering, so when we got her diagnosis our whole world fell apart. We will never forget the words, ‘your daughter has the most severe type of EB – Herlitz Junctional EB – and she won’t see her first birthday’.”
The couple were devastated. However, they wanted to do everything they could to make her life as comfortable as possible, so put their grief aside. “We didn’t really have much time to process the diagnosis, but from that moment on our lives would never be the same again,” says Maria. “We decided that each day of Lola’s life would be filled with love and fun – as every moment we had with her was a gift and each one of her smiles was the fuel that kept us going.
“Her daily routine was really busy with medication, creams, nebulisers, baths and dressing changes so her condition really kept us on our toes and taught us to live each day at a time.
“We both had to leave work in order to give her the best care, but we were never alone. People would often say how strong we were to be able to keep going with such a devastating diagnosis, but it was a team effort. We could not have done it without the amazing people we were lucky to meet along the way.”
Maria and Barry’s beautiful baby girl died on November 27th, 2016, when she was just seven months and one day old.
Heart broken, they took a long time to even consider rejoining the world.
“Lola was a proper lady but also a tough cookie and it was rare to hear her cry,” says Maria. “She seemed to understand so much and filled the room with her presence. In just seven months she changed the lives of everybody around her and made us all a little bit better. She died on a Sunday evening, quietly, in Barry’s arms, while we kissed her and told her we loved her. When she took her last breath, I felt like my heart was breaking, it was literally physically breaking inside my chest. How could we live in a world that she was not part of anymore?
“She died four weeks before Christmas, so that was a particularly tough time and even though she was gone, we had to keep fighting for her. So we kept raising awareness of what EB is and also tried to keep her memory alive. We felt that she left us with the responsibility of helping to find a cure for the condition that took her life.”
October 21st-27th is National EB Awareness Week (A Debra Ireland Butterfly Tattoo can be picked up at Applegreen service stations or text Butterfly to 50300 to make a €4 donation)
One year later
Twelve months after Lola’s death, the Meath couple found out they were expecting again and the baby would have a 25 per cent chance of having the same condition. But they didn’t let this dampen their enthusiasm and underwent tests with the intention of ruling this out – tragically this was not the case.
“Although we knew our baby had a 25 per cent chance of having the same condition as Lola, we were over the moon,” says Maria. “There was no way this could happen to us twice so we focused on the joys of being pregnant again, but being aware that there was a small chance that our baby could also be born with EB.
“We decided to have an amniocentesis done when I was four months pregnant and we got the results on February 26th, 2018. It’s hard to explain how we felt – our worst nightmare was happening again and we knew exactly what was ahead of us. It was terrifying, to say the least. But we had to find the strength and determination to give our little Luca the best quality of life possible.
“Terminating the pregnancy never crossed our minds because we knew we could give him a good life, despite the medical issues he would be born with. After all, Lola had already given us the best training possible, so we knew we were the best parents to mind another baby with EB.”
Luca Flynn-Monzon was born on July 23rd, 2018, and his devoted parents told medical staff that their main goal was to give him “quality of life” as they knew he couldn’t have quantity. “We knew he was going to die and there was nothing we could do about that,” says Barry. “All we could do was make sure he had a comfortable and pain-free life. And he was a happy little boy, resilient like his big sister, playful, really cheeky and an absolute messer. He loved being tickled and would give a loud, hysterical and contagious laugh which confirmed that we did right by not giving up and deciding to give him our all.
“We were able to do so much with him – we spent Christmas together, Easter, his first birthday, our own birthdays and both Mother and Father’s Day as well as our wedding. His life was a lot more stable than Lola’s would have been as he was a great feeder, which meant he would have more healing resources – the calories in his milk were pure gold for him. We were also able to apply everything we learned from Lola and this time our attitude was more determined than three years ago. We were not new to it, we were not shocked by the diagnosis and had time to prepare before he was born. I believe all this had a major impact.
“And even though our kids never met, Lola had a great influence in Luca’s life and wellbeing and we are so proud of her for that.”
A second loss
Life can be unspeakably cruel and Maria and Barry lost their second precious baby on August 22nd, 2019, when he was just 12 months and 30 days old.
“Luca passed on a Thursday, almost unexpectedly, quietly, with no big fuss,” says Maria. “He just fell asleep and never woke up. As we did with Lola, we held him in our arms and we whispered to him how much we loved him. We asked him to say hello to Lola from us, and we hugged him tight so he’d know we were there while he took his last breath.
“The only way we are getting through this is by firmly believing that our babies couldn’t stay with us for a reason. We might not understand the reason fully yet, but if this happened to them just randomly it would be gruesome and cruel. I believe Lola and Luca had to be born to bring Barry and myself closer, to give us a sense of time that not many people have – enjoy today, you might not have tomorrow – and to give us a privileged perspective of life. We now know what’s important and we have to live our lives for our daughter and our son. We have no time to waste, we owe it to them.”
Despite the unimaginable depth of their grief, Barry and Maria have pledged to help other people who are affected by EB both by raising awareness of the condition and raising funds to help with research. “We promised ourselves we will help to find a cure for this savage condition and we hope to see it in our lifetime,” says Maria.
“That’s probably our babies’ biggest legacy: they will be part of finding a cure for EB. Is there anything bigger than that?”