Our daughter, Leia, was born at the end of February 2023 and aside from arriving quickly it was a very straightforward birth, and she was perfect.
After completing all her newborn checks we were able to bring home but less than 24 hours later Leia started to struggle with her feeds, choking a little and making loud noises while breathing. We became concerned, and the midwife who came to check on Leia was also worried. With Leia’s breathing worsening overnight we I rushed her to Rotherham Hospital. We just knew something was seriously wrong with our daughter.
With Leia not being able to swallow she hadn’t fed properly in about 16 hours so the doctors gave her an NG tube to pass food directly into her stomach while she continued to be monitored. However, an x-ray revealed that the fitting had failed due to the tube coiling.
As the tube had been unable to reach Leia’s stomach, it was suspected that she had Tracheo-Oesophageal Fistula (TOF), a condition where the oesophagus (food pipe) and stomach are not properly connected. She needed specialist care immediately, so arrangements were made for EMBRACE, the specialist ambulance transport service, to take us to Sheffield Children’s Hospital. When we arrived the doctors explained that Leia would require several operations to stretch her oesophagus and reconnect it to her stomach, the first of which was scheduled for the next morning.
“Luke was once again supported by Magnolia House, in the same room as before. The ‘Home from Home’ kept him close to Leia, which was incredibly reassuring for us all.”
We were in complete shock. We couldn’t comprehend what was happening or what our newborn daughter was about to go through. We had been told on the way to Sheffield that parents are unable to stay on the neonatal intensive care units (NICU). Even though we spent that first night on camp beds at the hospital, we were panicking about how we were going to stay with our daughter. As Leia went down for her surgery, we were met by a lady from The Sick Children’s Trust who told us we had a place to stay at Magnolia House. She explained that it’s a ‘Home from Home’ run by the charity where families can stay close to their seriously ill children, completely free of charge. It made such a massive difference to us. We had somewhere private to process everything together and get a good night’s sleep while only being minutes away from the hospital.
Leia’s surgery went well and for the first week she was in hospital we both stayed at Magnolia House. Luke continued to stay at the ‘Home from Home’ while I split my time between the hospital and home so I could look after our other children, five-year-old Noah-Billy and Aria-Rose, who is two. It was such a tough time for us. I travelled back and forth every day for weeks on end. However, still recovering from the birth and with an infection, one day I found myself struggling to stay awake at the wheel. It was really scary. Clearly unable to continue driving, Luke began taking me to and from the hospital, making the trip four times a day, which took a huge toll on us both. It made us realise just how crucial Magnolia House and the charity’s other ‘Homes from Home’ are, ensuring parents don’t have to make multiple long journeys a day. It allowed Luke to always be at the hospital with our little one when she needed us the most.
As Leia’s operations continued she needed additional oxygen support, but the doctors couldn’t work out why. Following investigation, it was concluded that she had been suffering reflux. As her feeds could only get so far down, some was spilling into her breathing tube, causing chest infections. Leia was switched to an NJ tube which connected straight to her intestine. She was also diagnosed with Tracheomalacia, a floppy windpipe. Leia continued to get stronger and halfway through her treatment she was stable enough that we could return home. While naturally apprehensive, we were pleased to leave the hospital.
A few days later, Leia started struggling with her breathing again, which was followed by an episode where she stopped breathing completely. Luke had to perform CPR on Leia for a minute and 40 seconds before he was able to bring her back. It was the most terrifying thing we have ever experienced.
We were rushed back to Rotherham Hospital for a day before Leia was transferred to Sheffield Children’s Hospital. She was diagnosed with covid, rhinovirus and chicken pox, a combination that had a devastating impact on her health. She was given oxygen and remained in hospital for the rest of her treatment. Luke was once again supported by Magnolia House, in the same room as before. The ‘Home from Home’ kept him close to Leia, which was incredibly reassuring for us all.
After 11 weeks in hospital Leia was discharged and is now doing well. We go back to the hospital every week for check-ups and recently had two appointments with her TOF and respiratory surgeons. She’ll continue to have the procedure to stretch her oesophagus as she gets bigger and may need another surgery in six weeks’ time. If she does need the procedure again, we expect it will be a couple of nights in hospital with oxygen support, but she really is doing as well can be. We will always be so thankful to The Sick Children’s Trust for supporting us through one of the most challenging times of our lives.
Ellie-Jae and Luke Bingham, Leia’s parents.
