Her condition could change so quickly that we just couldn’t leave her
Behind her cheeky smile, you would never guess that our nine month old baby, Ada, had been through 16 operations since she was born.
At our 20 week scan, Simon and I were heartbroken to find out that Ada had two rare conditions with her food pipe (Tracheooesophageal Fistula and Oesophageal Atresia (TOF/OA)). It was joined to her windpipe and wasn’t connected to her stomach properly and we knew this meant that we wouldn’t be bringing her home straight away.
Ada was born naturally at 36 weeks and was taken straight over to Sheffield Children’s Hospital for immediate surgery and treatment. At just 24 hours old, Ada underwent surgery to disconnect her windpipe from the oesophagus and reconnect her oesophagus to the stomach. It was a major, major, operation for her 4lb 8oz body. She was in theatre for six and a half hours and it was the longest time of our lives.
To recover from such a big operation, Ada had to be paralyzed, sedated, and a ventilator took over her breathing. As any slight movement could undo all the work that had just been done. Once Ada was woken up and off the ventilator we had another major setback during the night as one of her lungs collapsed due to the area where they connected her oesophagus back to her stomach coming apart, the surgeons and doctors said it could take anything from weeks to months for it to heal naturally, and for us to prepare for that eventuality. We were worried, scared and devastated, not knowing what the next few months would bring.
Knowing that Ada would need such intensive care when she arrived, Simon and I thought about our options in terms of being close to her. We found out about The Sick Children’s Trust which runs ‘Homes from Home’ offering families a place to stay free of charge when their children are in hospital prior to Ada’s birth. We visited the Neonatal Surgical Unit at and one of the ward sisters gave us a tour. Initially we weren’t going to stay there and thought we’d be able to go home every day as we live in Sheffield but seeing how fragile she was and how her condition could change so quickly during her post-op recovery, we just couldn’t leave her. Having Magnolia House there, knowing we could be on the ward in seconds if anything was to happen, was a lifesaver. It was just a hallway and a door away.
Not only could we be with Ada in seconds, but Magnolia House felt like a ‘Home from Home’. With the living and dining room, and our own bedroom we could still relax if we wanted to and cook actual food in the kitchen so we could make sure we were looking after ourselves and get some sleep so we were ready to tackle each day.
Ada spent five months on the Neonatal Unit, and so far has had 16 operations/surgical procedures. She is still nil by mouth and fed straight into her bowel for 19 hours a day and has procedures to open her oesophagus every four weeks.
It’s still a long way to recovery but she is the happiest, smiliest, cheekiest nine month old baby you could ever meet. She is so strong and resilient that you wouldn’t know all the struggles she has. She is an amazing little girl and a true warrior.
To celebrate volunteers' week, we are speaking to a few volunteers across the country who give up their time to help us like Jill, Lynn and Katie who hold a book sale for our Sheffield 'Homes from Home' every month
Every year we help over 3,500 families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.