Our daughter Alba Mila Perrozzi surprised my husband (George) and I by coming into the world just over six weeks earlier than expected. She was rushed to the Neonatal Intensive Care Unit because she kept turning blue. After a couple of hours, a doctor came to tell me that Alba was born with Oesophageal Atresia and Tracheoesophageal Fistula (OA/TOF).
At the time, we didn't know what that meant for her life, other than our precious baby was going to be transferred to another hospital for an emergency operation. There are so many things to think about when you are expecting the arrival of your first child and how your life will change but nothing prepared us for this, we were absolutely devastated.
OA/TOF is when a baby is born unable to swallow because their oesophagus is split in two and part of the oesophagus is attached to the trachea (windpipe). After Alba's first surgery, at just a day old, she was then placed into an induced coma. However, we found out a month later that her oesophagus had reconnected and needed another major operation. Alba was five months old when she first left Great Ormond Street Hospital. She is nearly three years old now and has been tube fed her whole short life, with a very limited amount of oral feeding. She has had four recurrent fistulas, seventeen procedures under general anaesthetic, over thirty trips to A&E and ten admissions to our local hospital.
OA/TOF is a lifelong condition that affects 1 in every 3,500 babies. I am running the 2025 London Marathon for TOFS charity, who support those born with this condition and their families. They are an amazing charity who have supported my family and so many others globally. They raise awareness, provide information and research extensively into this condition, to help TOFS live long and healthy lives.
We have been blessed with our daughter Alba and we thank God for sustaining us every step of the way because with the Lord we have never been alone.
Psalm 46:1-3
"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling."
