Aoife and Ciara Jane

The moment Susan and Gerard met, they knew they wanted to have children. When Susan became pregnant with their eldest child Aoife, it felt like an absolute miracle. Now she couldn’t picture life without their two little girls, they mean the absolute world to her but unlike other Mum’s, Susan doesn’t know what it’s like to bring a healthy baby home from the hospital. 

When Susan was pregnant with Aoife, they found out she had Shone’s Complex, a serious heart condition. Aoife was born on the 4th of November 2013 by caesarean section. When Susan held her baby for the first time the words “where have you been, we’ve been waiting for you for so long” just poured out of her. Just like any new parents they took photos and had cuddles but then at only one-hour-old Aoife was transferred by ambulance to CHI at Crumlin. 

It was heart-breaking for Susan to have her baby taken from her immediately after giving birth. She saw other mum’s with their babies and despite being exhausted and in recovery from a serious operation she summoned all her strength to be by Aoife’s side. 

At just two days old, Aoife, a tiny new-born baby, was having open heart surgery. Handing Aoife over at the operating theatre doors was one of the hardest thing Susan has ever had to do. She was entrusting her whole world to the medical team and couldn’t shake the feeling that she might never see her again. As the doors closed behind Aoife, Susan remembers shouting “she’s my little girl, mind her, operate on her and bring her back to me safe.”  

Thankfully, Aoife came through surgery well. She was still very sick so she was kept in ICU to begin her recovery. Throughout their time at Crumlin, Aoife’s parents were overwhelmed by the kindness of the staff. Susan remembers “the staff in ICU were absolutely amazing. They were so kind and thoughtful and they cared for all the children in ICU as though they were their own. I remember going into the ICU and there was a nurse singing to Aoife. He was cleaning around her feeding tube and singing away to keep her calm. Aoife had been gifted teddy bears and she was wrapped in a crocheted blanket that a cleaner on the ward had made. It was just amazing, it really was.” 

Crumlin became home for Aoife’s family for six weeks.The new heart wing had opened the day that Aoife had been transferred so once she was moved to the ward, she was given a brand-new room with world-class facilities. Susan and Gerard were so grateful for the comfort and privacy the room provided. There were even sleeping facilities and blankets so Susan could stay by Aoife’s side.  

On the first week of Christmas it finally came time for Aoife to go home. Susan and Gerard felt like they had won the lottery. The start of Aoife’s life had been all hospitals, tubes, wires and monitors and now they were finally taking her home to begin her life in Cork. 

Aoife is now a mischievous seven-year-old with a great sense of humour. She loves dancing and drama and has the most amazing smile. Her condition means that she will continue to visit CHI at Crumlin as an outpatient until she’s classified as an adult.  

Two weeks before Aoife’s first birthday her dad sadly passed away. On the same night Aoife was having her open-heart surgery, Gerard started experiencing episodes. He was still having these episodes when Susan found out she was pregnant with their second child Ciara Jane. When she told him that their baby was due on his 40th birthday they had a good laugh about him being in the delivery room rather than celebrating with the lads. He was over the moon and so excited. But not long after, Gerard had a bad episode. He fell into Susan’s arms and just said, “I’m so sorry.” His heart stopped and he was gone.  

Susan and Gerard were childhood sweethearts and all throughout her pregnancy with Ciara Jane all she could think was ‘he’s never going to meet her.’ 

The day Ciara Jane was born, she was cute as a button. But when they put her into Susan’s arms it was just horrific because she knew Gerard should’ve been there with them. The staff wrapped her up and laid her down and said “Look we think she has Down Syndrome.” Susan broke down into tears with the weight of everything coming down on her. She was exhausted and frightened. Her husband was gone and now she didn’t know how long she’d have Ciara Jane for; she thought in that moment that Gerard was coming to take her.  

Ciara Jane was very sick. She had a bowel blockage, which meant the milk was going in but nothing was coming out. Once again Susan found herself alone as her baby was taken by ambulance from Cork to CHI at Temple Street in Dublin. And once again her tiny newborn baby was operated on at only two-days-old. 

This time Susan felt very alone without Gerard by her side. She was given parents accommodation in the hospital but as soon as she was allowed in with Ciara Jane in the mornings she was the first waiting at the door. She remembers “my family was my rock, although they were miles away – my mum and brothers and sisters would lookcouldn’t stay, she had to look after Aoife back in Cork and my mum would come up to be with Ciara Jane at the weekend while I travelled down to Cork to spend time with AoifeBut in the hospital, So I was mostly on my ownthere by myself and you have to take these breaks where you leave intensive care for 2-3 hours a day and I didn’t know what to do with myself. The intensive care nurses were just unbelievable. They were bending over backwards, they couldn’t do enough for me.” 

Susan celebrated her 39th birthday in Temple Street. The nurses organised cake and balloons and then all of a sudden Aoife arrived. It was her first time meeting her little sister and it was such a beautiful moment. Not long after that, once her blood sugar levels were under control, Ciara Jane was allowed to go home to start life with her sister and the rest of her family.  

Ciara Jane is very similar to Aoife and then totally different at the same time. She is so full of love and she’s a cheeky little child as well. Every morning she wakes up and lies next to Susan and says “Mummy, it’s a new day!” Susan used to sing ‘Just give me a reason’ by Pink to Ciara Jane in hospital. There’s a line in the song that really resonated with how she was feeling at the time that says “we’re not broken just bent but we can learn to love again.” Now whenever that song comes on Aoife and Ciara Jane drop whatever they are doing and start singing and dancing- for Susan it’s moments like this that are truly magical.  

Susan knows better than most the value of fundraising for families and children in CHI at Temple Street and Crumlin. For all those who are thinking of signing up as a monthly donor with Children’s Health Foundation Crumlin she has shared the following message: “It means an awful lot to parents that there are people out there looking out for us. I mean you have the doctors and nurses but then you have the public supporting them to ensure their job is made as easy as possible. You really never know the day or the hour you’re going to need the hospitals and aside from this you are saving children’s lives. Everything counts and I for one am eternally grateful to all the people that have helped my family.”