Today is Global Congenital Diaphragmatic Hernia (CDH) Awareness Day and in support of this we're sharing the amazing story of Hayley, told by her Mam Joanne.
"Hayley had her first bath at six weeks old. She was ventilated and there were tubes everywhere so it took some major organisation. But once we got her into the bath she was all gurgles and smiles as she kicked her little legs in the water. I’ll always remember that moment. It was so comforting and special to finally be able to do something so normal with our baby.
We found out at my 20 week scan that our baby had Congenital Diaphragmatic Hernia (CDH). As first-time parents, we were meant to be entering the most exciting time of our lives. Instead all our excitement and hope for the future was replaced with worry, concern and questions; would our baby even survive? With only a 50% chance of survival, no one could tell us for sure whether our precious baby would make it.
On the 12th of October 2014 things took off at a rollercoaster pace. I went into labour and Hayley was born prematurely at just 33 weeks. We were ecstatic that our baby girl had arrived, she seemed so perfect to us but she was very, very sick. I ached to hold her but she was too fragile. Inside her little body, a hole in her diaphragm had allowed her abdominal organs to travel into her chest cavity; making every tiny breath a struggle.
Two days later we began the longest journey of our lives. I remember sitting in the back of my Dad’s car completely petrified as we set off for Dublin from Cork following the ambulance that was keeping our precious baby alive.
At first it was totally overwhelming finding ourselves in CHI at Crumlin, a world so different from our own. We just wanted to take Hayley home and be with our new-born in our safe, comfortable, familiar place. But we very quickly began to feel a sense of relief as we realised Crumlin hospital was exactly the place we needed to be.
The staff really looked after us. They explained everything to us and put as at ease. They were just so friendly and the hospital began to feel really homely. All the wards are so colourful and in a strange way it’s actually a happy, friendly place to be.
Hayley stayed in the Paediatric Intensive Care Unit (PICU) for 74 long days. She was very sick and it was touch and go for a long time as she struggled to breathe on her own. At only four-weeks-old her tiny body had been through major surgery twice. During this time the staff became our family. They took the best care of Hayley, Declan and me. They spent time with us, gave us a shoulder to cry on and helped bring joy by creating special moments. They never gave us false hope but they helped us to understand what was going on and comforted us every step of the way.
On St Stephen’s Day 2014 Hayley was transferred to St Peter’s ward and three weeks later we were told we could take our baby home. We could hardly believe we’d actually made it. We felt so lucky that we were leaving as a family, intact; the three of us. The staff in CHI at Crumlin didn’t just save Hayley, they saved us, and they saved our family.
Crumlin is so far from home but the staff are just so amazing that it has become like a second home to us. When you’re in the hospital you really notice all the fundraising that has been done. We’re so grateful that such a place exists because without it, our little girl wouldn’t be here with us today.
Hayley turned six in October. She’s very loyal and kind. She started school last year and on milestone days like these, the frontline staff at Crumlin are never far from our minds. She loves looking after her baby brother and sister and is great craic with all the family! Despite all the trauma Hayley went through as a baby, it’s the experience of being so well cared for that stays with her. It’s reflected in the care she shows in her relationships.
When Hayley goes back up to Crumlin for her check-ups she loves saying hello to all the doctors and nurses. When she’s asked what she wants to be when she grows up she says “I want to be a baby doctor just like the ones that saved me!” -Joanne O’Sullivan, Hayley’s Mam
When a baby is critically-ill, like Hayley, the medical teams need the very best equipment possible to give that child the very best chance. Please donate today so that sick children throughout Ireland continue to get the world-class care so crucial to their survival. #cdhawareness