Róisín's Story
Róisín was born with congenital nephrotic syndrome – a very rare, serious kidney disorder that she was diagnosed with at two years old. Christina, Róisín’s mum shared their story with us.
“January 28th 2018, was the day our nightmare began. It was a Sunday, Róisín woke up and she was unrecognisable. Her face puffy and her eyes were barely visibly, she couldn’t see properly out of them. It was so upsetting to look at her like this.
Róisín had tests done in our local GP, but then later that week in Children’s Health Ireland at Crumlin, her diagnosis was confirmed. I had never heard of this condition, I hadn’t a clue, but from then on, we began to learn a completely different language, we became so familiar with all the medical terminology.
The following few years were really difficult, most of Roisin’s time was spent in Children’s Health Ireland at Crumlin. Roisin’s immune system was so low, infection was the real problem, not the kidneys, but it was only a matter of time before they also began to fail.
In July 2020 Roisin’s first kidney was taken out and she began dialysis. Only two months later her second kidney was also taken out. Róisín was really sick at this stage and was a shadow of the child she once was. She could barely eat; she would become very bloated, and her skin was always a grey, purple colour. Roisin had no energy at all.
She needed masses of medication, daily injections and 14 hours of home dialysis which meant she spent about 15 hours each day tied up to a machine. By this time, we desperately needed a kidney for her, and she was placed on the deceased donor list. I also started getting tested to see if I was match. After months of tests, it was deemed I was a perfect match, this was a huge relief, but a doubled edge sword as it meant I wouldn’t be with Roisin when she was being operated on. We had never spent more than a couple of hours away from each other.
Finally, we received a date for transplant, the 4th of October 2021. Róisín was extremely sick at this point, she was taken into hospital eight days before. This was to try prepare her for the big day. My family and I had to strictly cocoon for four weeks prior to this. During all this the world was also dealing with Covid-19 which meant that I couldn’t visit Róisín while she was in hospital.
This was so difficult and hard to explain to a 6-year-old, but we persevered. The long-awaited morning came and as I was preparing for surgery, everything was in place for Róisín in Children’s Health Ireland at Temple Street. Her ICU bed had been secured as this was always a factor in allowing the operation to go ahead. The anaesthetist was ready for me, it was 7.55am and surgery was scheduled for 8.00am, then a call came in, to hold everything.
There was a problem with Róisín, she had a mild temperature which meant the surgery was called off. This was devastating news. Everyone was standing around in shock and I was lying on the bed in a total daze.
We went back home, started our dialysis routine, all the while Róisín was deteriorating. It was beyond heartbreaking; my family and I were in shock. But we just had to stay hopeful that we could get Róisín transplanted soon.
On the 13th December 2021 the transplant went ahead and Róisín finally got her new much needed kidney. I was told the kidney had begun to work even before it was fully connected.
This was the best news ever. After a few days in Beaumont Hospital, I was able to finally see Róisín and I was brought over to visit her. Holding Roisin that morning was the best feeling I ever had in my life.
After the transplant Róisín had some serious complications, but thankfully the whole time the kidney was working well. She ended up staying in hospital for almost two months, but since the day she left she has gone from strength to strength.
She has grown so tall, she has energy, she is now living a full and healthy life.
During all those scary years, the Nephrology Ward in Children’s Health Ireland at Crumlin became our second home. We couldn’t have visitors due to Covid which brought us even closer to the amazing staff. From our miracle working doctors and nurses, to the cleaning lady and dinner ladies, these people got us through the most horrendous days. Some days were particularly black, but the support I had was incredible. For the transplant we were transferred to Children’s Health Ireland at Temple Street and the staff in Temple Street were amazing and made the transition as easy as possible”,
– Christina, Roisin’s Mum.
