My daughter needed major surgery at less than a day old, it was the most terrifying time of our lives
My twin girls, Ava and Mila, were born in May 2022 but my partner, Paul, and I knew things weren’t going to be straight forward. At 20 weeks pregnant I was seen in the foetal medicine department at the Royal Victoria Infirmary (RVI) in Newcastle. Ava had previously been diagnosed with a brain condition called rhomencephalosynapsis and the doctors could see that she had a lot more amniotic fluid surrounding her body than Mila. They drained some of the fluid while the girls were still in the womb but it kept building back up. This confirmed their diagnosis that Ava had oesophageal atresia and tracheo-oesophageal fistula as she wasn’t swallowing the fluid.
These conditions cause an abnormality where the oesophagus, the tube that connects the mouth to the stomach, isn’t attached correctly, ending in a pouch further up her body. We were informed that Ava would likely need surgery shortly after being born to correct the condition. We tried to come to terms with what this would mean for our daughter and spent a lot of time reading about Ava’s conditions before the twins arrived. Nothing could prepare us though for when we saw her tiny body on a ventilator, covered in tubes and wires. It was very tough for us to see her like that.
Assessments were quickly carried out and it was determined that Ava had the most common version of the condition, meaning that she would be having surgery that same day. Having our newborn daughter go through major surgery when she was just hours old was terrifying. The doctors and nurses were amazing though, keeping us updated throughout her procedure where they close the gap between the oesophagus and windpipe before sewing together the upper and lower parts of the oesophagus. The surgery was successful, and Ava was taken to the special baby care unit (SCBU) where she was closely monitored during her recovery.
There were a few complications after Ava’s surgery. They found that both of her vocal cords were paralysed, but were unsure how this had happened. It could have been because of the effects from the anaesthetic, from the surgery itself or potentially part of her brain condition. This meant that Ava was unable to cry or make any noise for a while, but as she recovered she started making little sounds as her vocal cords started to work again. She was soon letting us know she was there, or when she needed something. Just when we thought Ava was getting better, she had a setback She developed tracheomalacia, a floppy trachea, which caused breathing difficulties where she would turn blue and need assistance from an oxygen machine. She underwent emergency surgery to lift the aorta and fix it to the sternum so she could breathe correctly. It was a second major surgery when she was just days old.
Ava was in hospital for a total of eight weeks. With the RVI more than 90 minutes away from our home in Cumbria we were really worried about how we would stay by Ava’s side, particularly after Mila and I were discharged. The nurses on the SCBU told us about The Sick Children’s Trust and Crawford House who could help us. We’d never heard of the charity before or Crawford House but it is a ‘Home from Home’ located on the hospital site just a two-minute walk away from the children’s ward. The charity supports families with a place to stay completely free of charge and it was exactly what we needed in that moment. Mila and I joined Paul at Crawford House, where we all stayed together right next door to Ava. It would have been awful if we had to leave Ava at the hospital, and constantly travelling back and forth from home with a newborn just wouldn’t have worked. Being told we had a room at Crawford House was music to our ears and, for seven weeks, helped to ease our stresses.
Without the support of The Sick Children’s Trust we would have really struggled financially with the cost of petrol and hotels, especially in the current cost of living crisis. Thanks to Crawford House we were never more than a short walk away from Ava’s hospital bedside. As a family, we could just focus on her getting better..
Since leaving hospital Ava has been doing really well. She is nearly eight months old and is starting to do more things for herself. Ava is still being tube fed as she lost her sucking reflex and therefore wouldn’t take a bottle. She also has physiotherapy to help with her head control and general movement. Ava still returns to the RVI for feeding clinics and check-ups, but her surgeon and respiratory consultant are both very happy with her progress. Ava also requires regular dilations of her oesophagus due to the scar tissue narrowing her throat and causing strictures. We are hopeful that her oesophagus will get stronger and eventually stay open without treatment. We love seeing her get stronger everyday, being with her twin sister. Being at home, together as a family, is just wonderful.
During Ava and Mila’s Christening we raised £400 to support The Sick Children’s Trust for making sure we could always be with Ava. Without Crawford House it would have been a much harder experience and a lot more stressful mentally, emotionally, physically and financially. What The Sick Children’s Trust does is truly amazing for families, and we can never thank them enough for their support.
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