Diagnosis and treatment
Our daughter Ophelia was born in November 2024, and after suffering two previous miscarriages, she was our precious rainbow baby. The pregnancy
was emotionally challenging, not only due to our previous losses, but also because Ophelia was growing to be quite a large baby. As her due date approached, concerns arose about her delivery, and the doctors decided I would need an elective caesarean section. However, after the procedure was postponed twice, I went into natural labour.
I was given a hormone to speed up the process, but about halfway through the medical team became concerned with Ophelia’s heart rate. Because she was at risk, I was taken for an emergency c-section. Thankfully, Ophelia was born safely at Chesterfield Hospital, and initially, everything seemed to be fine – we were thrilled to finally have our baby here with us.
Due to the nature of her birth, Ophelia was monitored closely by the nurses. That’s when they noticed her oxygen saturation levels were consistently below 80%, when they should have been between 91-95%. My husband, Sebastian, went with the midwife to see the paediatrician whose initially suspected Ophelia’s low oxygen levels were simply a reaction to being outside of the womb. What happened next was a series of remarkable moments that led to a life-saving diagnosis.
By pure chance, the consultant in charge of the neonatal intensive care unit (NICU) was at the hospital on her day off – she had returned after forgetting her bag. Our midwife asked her to look at Ophelia, and she immediately saw that something was wrong. After a few tests, she moved Ophelia to the NICU, where 20-30 medical staff started working on her. In another stroke of luck, the paediatric cardiologist was also there on her day off to supervise medical students. She assessed Ophelia and performed a scan, ultimately diagnosing her with a rare heart defect called Total Anomalous Pulmonary Venous Drainage (TAPVD). TAPVD is a condition where the blood vessels from the heart are incorrectly connected to the 
lungs, causing oxygenated blood to be pumped back to the lungs instead of around the body. It affects just one in every 10,000 births and accounts for 1% – 1.5% of all congenital heart defects. The cardiologist had never treated it before and only recognised the symptoms from a textbook. The condition often goes undiagnosed until a person goes into heart failure. I truly believe Ophelia has a guardian angel watching over her – if one of those coincidences hadn’t happened, her diagnosis might have come too late.
It all happened so suddenly. Sonographers aren’t trained to detect TAPVD, and with no warning, we were facing a terrifying new reality: our daughter wouldn’t survive without open heart surgery. Plans were quickly made for Ophelia to be transferred by the Embrace specialist ambulance service to Leeds Children’s Hospital, where expert surgeons could carry out the procedure. As I was recovering from the c-section and completely bedbound in Chesterfield, Sebastian travelled the 53 miles with Ophelia to Leeds. It was absolutely horrendous. In a matter of hours, we went from welcoming our baby to fearing we might lose her.
Support from The Sick Children’s Trust
Ophelia was heavily sedated for the journey, but the stress on her body caused her to crash. Thankfully, the Embrace team managed to stablise her before she was admitted in Leeds. The NICU team knew we didn’t live locally, so they quickly arranged for Sebastian to stay at Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust. To have a place to stay just across the road from the hospital, completely free of charge, was an enormous relief. When your child is so critically ill, worrying about where you’re going to stay should be the last thing on your mind. Eckersley House removed that burden and allowed us to focus entirely on Ophelia.
Three days later, I was well enough to join Sebastian and Ophelia in Leeds. Ophelia was scheduled for open heart surgery at one week old, but unfortunately, she contracted Respiratory Syncytial Virus (RSV) while on the ward, and the operation had to be delayed until she was three weeks old.
During surgery, Ophelia’s heart was stopped and a bypass machine took over, pumping blood around her body. The surgeon disconnected the veins that were incorrectly attached to her lungs and redirected them so her heart could function properly. She was then taken back to the NICU, where she recovered remarkably well. Within hours she was breathing on her own, which was an incredibly positive sign. She spent a further six days across the cardiac wards before doctors gave us the wonderful news that she was ready to go home.
Since recovering
Throughout Ophelia’s time in Leeds, Eckersley House supported us with everything we needed. We had a space to look after ourselves away from the
intense environment of the hospital. It can be incredibly difficult being on the intensive care units for 14-16 hours a day, sometimes even more, so having that chance to rest while knowing you are still so close to the hospital made such a difference, especially while I was recovering from my c-section. The staff at Eckersley House were incredibly supportive, comforting us through difficult moments and even doing our laundry when we were too overwhelmed. All that extra support really made a difference. My sister was able to stay with us, and my parents could visit, which made us feel fully supported. The charity calls their houses ‘Homes from Home’, and that’s exactly what it was for us. I genuinely don’t know what we would have done without Eckersley House.
Since recovering, Ophelia has been doing really well. The surgery successfully corrected her heart defect, and at follow-up appointments she has shown great progress. While she’ll be monitored by cardiologists for life – and there is always a chance she may need further surgery – it is looking unlikely at the moment. We’re so grateful to the medical team at Chesterfield Hospital and Leeds Children’s Hospital for their expertise and care, and to everyone at Eckersley House for looking after us when we needed it most. We truly can’t thank them enough.
Olivia Mainiero, Ophelia’s mum
