My Story So Far:
Rose Cade
Hello everyone,
I'm Rose, and I want to share with you the remarkable journey I've been on since the day I was born. It hasn't been easy, but with the love and support of my family and the incredible medical team, I've overcome every challenge thrown my way.
Even before I was born, my journey had its challenges. There were weekly visits to Salisbury Hospital to make sure I was growing okay, and check-ins at Princess Ann’s Hospital in Southampton, where I was diagnosed with Atrioventricular Septal Defect (AVSD). This means I had two holes in my heart and a leaky valve. I was going to need an operation when I was six months old.
From the moment I took my first breaths, I needed a little extra help. You see, I was born with Trisomy 21, also known as Down Syndrome. Right from the start, breathing was a struggle, and I relied on the expertise of doctors and nurses to help me along. I spent a week in the hospital because I struggled to feed and have a poo, as well as having to be put under a big bright light due to being Jaundice.
After leaving Salisbury at one week old, it was then on to fortnightly heart scans at Southampton Hospital, where the amazing heart specialists kept a close eye on me.
Feeding was always a challenge for me. As breathing would become more and more difficult, I became more tired, and I struggled to put on weight. This led to a hospital stay where I was given an NG feeding tube. This was a big step towards getting me ready for the operation I needed, but things didn't go as planned. My operation had to be moved sooner than expected, as breathing was becoming very difficult for me at this point.
I got admitted to Southampton Hospital through A&E. I was given special breathing equipment called Airvo. After a week of being in the hospital, the doctors decided it was time for my AVSD repair.
My surgery didn't go to plan, and I found myself in need of an emergency operation the very next day. It was a scary time for everyone. After the second operation, the surgeons found my lungs were so full of blood that my only chance for survival was to be put on a machine called ECMO. This was to give my heart and lungs a rest. The doctors told my Mummy and Daddy that I was “one of the sickest children in the UK” and only had a “50/50 chance of surviving”. They were so frightened but thanks to the incredible medical team at Southampton PICU, I made it through. The ECMO machine, and medical staff saved my life, I would not be here today without them.
I spent quite a bit of time in the hospital, first with the feeding tube, and then for six weeks after my operation, but through it all, I've learned that I am stronger than I ever thought possible. With the love and support of my family and the incredible medical team, I've faced every obstacle with courage and determination. And I'm not done yet—I've got big plans for the future, and I can't wait to see what's next.
Thank you for joining me on this journey. Together, we'll continue to spread hope to those children and families that are in need.
With love,
Rose
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