Saturday, 17 November is World Prematurity Day and Emma Brophy, mum to Romey, is sharing her daughter's story to raise awareness for what this experience is like for families.
“Romey arrived early at 34 weeks and was brought to Crumlin straight away. She spent the first six months of her life in the Intensive Care Unit in Crumlin Hospital,” Emma says.
“Romey is my first child. We didn’t know anything was wrong until a week before she came. When I went for a routine scan they found this bubble in her stomach. They knew something was wrong, but they couldn’t tell at that stage what the problem was. It was such a scary time. I’m a young mother and you just think that everything will go smoothly. You don’t focus on what can go wrong. It was a shock to us, because up until that point I had had such a great pregnancy. They kept me in hospital that week and induced me. I had a caesarean section on 1 August, 2017 and she was immediately rushed to Crumlin.”
It was heartbreaking for Emma to not experience that moment of holding her newborn baby. ”At that stage I didn’t know exactly what was wrong with my tiny girl yet. I just wanted to hold her. The worst part was not getting to hold her before she was taken away. I just wanted to be with her and to protect her,” Emma says.
They had a gruelling time of it in the beginning. “She had a five hour surgery and her dad was in Crumlin with her. I didn’t get to see her until the next day. We didn’t even know if she would make it through the night. It was absolutely terrifying. It should have been the best days of my life but they were the worst. I had photos of her and she looked so unwell in them. They had to stop the surgery half-way through because they weren’t sure she would make it. But she kept fighting.”
After the operation they finally got answers. “After her surgery they explained everything to us. Romey had a colostomy bag, a peg and a suprapubic catheter put in during her operation.”
Being a mother to a premature baby brought many physical and emotional challenges for Emma and her partner. "It was really tough trying to recover from the caesarean section and be there in the hospital all the time. I was expressing for Romey too because she was so sick it helped her. It was a lot of pressure. Nobody was allowed to see her either because she was in ICU. We couldn’t show her off to anyone and we were in isolation with her. I had never thought anything would go wrong throughout the entire pregnancy. Then it seemed like everything had gone wrong at once.”
There were more scary moments and difficult times ahead for the family. “Unfortunately her first surgery was the easy part! After that, it got much harder. She was on a ventilator and we were trying to wean her off it. When she was nine days old we had her weaned off it. At that stage, Romey was doing fine so we got to go down to the ward. I thought for a moment that things would be OK. I dared to hope. But then she stopped breathing on the ward. I remember it so clearly. I had gone home to get clothes for Romey and as I walked in the door of the ward I saw a huge group of doctors gathered around my baby. I had no idea what was happening at that moment and I can’t even describe my panic. We were so lucky because they managed to bring her back and she went back on the ventilator and up to ICU.”
Romey had a long journey to where she is today. “The next six months of our lives revolved around the ICU where she stayed. The team tried to get her off the ventilator during that time but she wasn’t able for it. She’d be brought back to the ward, breathing on her own, and then she would stop breathing and the team would have to rush in again to save her. It was such a cruel emotional rollercoaster,” Emma says. "In the middle of this Romey had surgery on her oesophagus in September 2017. They knew her oesophagus wasn’t connecting to her stomach when they tried to put an NG tube down. She couldn’t swallow or feed and she would gag when she tried. That surgery went really well for her. Shortly afterwards she was diagnosed with tracheomalacia; her airway was narrow and floppy. We knew she would probably need tracheostomy surgery to breathe properly on her own. It just seemed like one thing after another. The doctors and nurses were so kind and patient – they explained everything so well, sometimes more than once. The whole thing was so exhausting, it was hard to take everything in and understand fully what was happening, especially because there were so many complications – conditions I had never even heard of, let alone understood!”
Eventually Romey got some good news.
"For a few weeks we didn’t try to take Romey off the ventilator and she was booked in for tracheostomy surgery to repair her windpipe, but before her operation we all decided to try to take her off the ventilator one last time. We were so nervous. If it didn’t work she would need more surgery. Every time my phone rang I thought something had happened, but she was breathing on her own and was brought down to the ward. Then, miraculously, one week later we went home, as a family, for the first time ever. The surgery on her oesophagus actually straightened her airways and she didn’t need the tracheostomy! We couldn’t believe it. Romey was six months old and it was a few weeks until Christmas. It was the greatest gift we could have hoped for. That was the greatest day of my life, getting to take my baby home. We knew we had a long road ahead of us in Crumlin, but we felt like we were a normal family and we were so grateful. We knew what it felt like to lose against the odds, finally we knew what it felt like to win against the odds!”
Now Emma’s baby girl is thriving. “Romey is 13 months old now and is doing amazingly. Every time I hold her, I still kind of think I’m dreaming. I can’t believe she’s mine. I can’t believe how well she is. She’s doing everything they warned us she mightn’t do. She’s completely weaned off her peg. She takes her own bottles and feeds. You wouldn’t even know she had a breathing problem. To this day I still wake up in the middle of the night and check she’s still breathing. Even though I know she’s OK now, I don’t think I’ll ever lose the fear. This Christmas, she’ll have more surgery to get rid of the colostomy bag and go to the toilet on her own. They’re big steps for her and for us.”
The little fighter has plenty of personality. “Romey is so bold! She’s such a mischievous little girl and her favourite word is ‘no’. Her nana and grandad absolutely dote on her. She’s so cute too, and she knows it. When she does something bold she gives you this look and you can’t give out to her. She’s a little fighter and we’re so lucky to have her. We’re so blessed, we really are!”
The family is eternally grateful to the team at Crumlin. “The hospital has been amazing the whole way through our journey. I spent so much time in ICU and I wouldn’t have my little girl if it wasn’t for the people working there. For the first six months of Romey’s life that was our home and I’ve made lifelong friends in ICU. Romey is prone to UTIs so even when she’s not having surgery we still go to Crumlin regularly. I feel like I spend more time in the hospital than my own house, so I’m grateful that everyone there is so good to us.”
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