Our daughter Isabelle Carys Mitchell was diagnosed with a Congenital Pulmonary Airway Malformation (CPAM) at 20 weeks gestation. After 10 challenging weeks with regular scans and monitoring, on 1st April 2020, Isabelle made an early appearance into the world at 29 weeks and 6 days gestation. Isabelle made attempts to breathe on her own but the CPAM was causing difficulties with her breathing and therefore she required significant ventilation. Isabelle was far more poorly at birth than anyone could have anticipated but she showed her determination and fighting spirit from the minute she was born.
At a couple of hours old, we were advised that Isabelle required immediate surgery. This was her only chance of survival. However, the surgery was also a significant risk and there was a high chance she wouldn’t survive the surgery. Isabelle’s Dad and I waited several agonizing hours watching the theatre doors that we had seen our beautiful Isabelle being wheeled into hours earlier. Eventually, the surgeon came out and gave us the incredible news that Isabelle had survived the surgery and it had been a success. Although we weren’t out of the woods yet, this was a positive step forward.
Over the coming days, Isabelle took longer than expected to recover from the surgery, she had several drains fitted and removed to help her lung to heal and seal again. Isabelle was thrown several challenges alongside the surgery recovery, this included sepsis, the requirement for several blood transfusions and a bacterial infection. For a few days, things were looking more promising. Our little girl was opening her eyes, wiggling her fingers and toes and responding to our voices. The nurses guided us in how to assist with her care and we longed for the day that we were able to have our first cuddle with our daughter.
We spent every day by her incubator. The staff can only be described as inspirational during this time. They provided us with regular updates, took time to get to know us as a family, reminded us to take a break or get some sleep (which is very easy to forget when you have such a poorly baby) and helped me with expressing milk for Isabelle. We were able to get Isabelle christened on the neonatal unit which was a very special moment for us. First Touch provided us with snacks to keep our energy up, an express pump and bottles, some very thoughtful chocolate eggs and a knitted chick for the Easter weekend that we spent on the neonatal unit and a recording of Isabelle’s christening. We received regular photos of Isabelle when we were away from the hospital through the vCreate remote video system that First Touch fund so that we could have regular updates. These little updates meant the world to us.
However, there was something constantly on the forefront of the doctors, nurses and our minds which is why Isabelle was taking far longer to recover than anticipated, even with the CPAM now removed. The team on the neonatal unit were incredible, they investigated every avenue of cure for Isabelle including advice from specialists, genetic testing as well as other testing to see if she had anything in addition to a CPAM that was the underlying cause to her poor health. However, on Saturday 25th April, Isabelle started to deteriorate rapidly. Preliminary test results came back suggesting Isabelle had a very rare and complex condition underlying from the CPAM. Very little is known about this condition worldwide.
On Monday 27th April, Isabelle Carys Mitchell gained her wings. She was cuddled in our arms until she took her last breath. She was one incredible baby that taught us so much in the 27 days that she was in this world about how to be resilient, how to love unconditionally and how ‘the smallest things take up the most room in your heart.’ She made us so proud.
Since Isabelle passed away, we have been informed that there are only 3 cases that have been diagnosed worldwide with her condition. Many doctors internationally are surprised that Isabelle managed to survive the pregnancy, let alone the labour and birth as well as 27 days in this world. She really did make the impossible, possible.
Isabelle’s Dad and I are so grateful for all the staff at our local hospital and St George’s hospital who enabled us to have 27 wonderful days with our little girl. Although a very challenging 27 days, particularly during the peak of the pandemic, the staff fought through every fight she faced with her, had the most amazing knowledge and tried every avenue of cure in hope for a more positive outcome for Isabelle. During Isabelle’s stay on the unit, we made some wonderful memories as a family that we will treasure forever.
She was our baby girl who showed so much courage, determination and resilience for someone so little. Isabelle touched so many hearts. Mummy and Daddy will always love you baby girl.
Isabelle’s mum, Nichola Callen
Isabelle’s parents are raising money for First Touch in Isabelle’s memory. You can make a donation on Isabelle’s Just Giving page