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Sofia's Story

as told by Sofia’s mummy



Sofia doing well – 12 months old


Sofia was born on the evening of 19th February 2010 after a very quick labour, 10 days overdue. At 6lb 11oz she was heavier than her sister had been and she took to breastfeeding very quickly. We were allowed home the following day.

Within the first week of being home I became concerned that she was breathing quicker than I would have expected, she had unusually cold hands and feet and she was breastfeeding for only 5 minutes at a time. I raised my concerns with the health visitor but she wasn’t concerned. That put my mind at ease but over the following week I still had a niggling feeling that things weren’t right, especially after a trip to the baby clinic showed she hadn’t put on as much weight as they would have liked. After a number of trips to the health visitor and GP and a chat with a friend who is a nurse, Sofia was finally referred to our local hospital with suspected bronchiolitis. Chest x-rays revealed what looked like a significant chest infection and she was admitted and treated with IV antibiotics for a week. When Sofia’s condition didn’t improve and a doctor thought she heard a heart murmur, an echo was done which revealed that Sofias heart didn’t look normal and was enlarged on the right side. Sofia was transferred to Glenfield hospital the following day for further tests to confirm exactly what the problems were with her heart. Nothing could have prepared us for what we were told. Sofia had a number of congenital heart defects including an Atrial Septal Defect (ASD), a large Ventricular Septal Defect (VSD) and Partial Anomolous Pulmonary Venous Connections (PAPVC), where the two pulmonary veins from her right lung went to the wrong side of her heart. On top of this Sofia had a small right lung and her heart was positioned to the right (dextrocardia). We were told that she was in heart failure and would need surgery to correct her unusual combination of problems. We felt like we had been hit by a ton of bricks, we couldn’t believe what we were hearing. Sofia was admitted to Glenfield whilst they tried to stabilise her with medication. 

The weeks and months that followed were some of the toughest we as a family have ever been through. Sofia was sent to the Evelina Childrens Hospital the following week for a detailed MRI of her heart. Sofia’s consultant and surgeon agreed that they would like to wait until Sofia was bigger and older before doing corrective surgery, however medication wasn’t enough to get her out of heart failure.  It was decided that open-heart surgery would be needed to fit a band on her pulmonary artery (Pulmonary Artery Banding) to restrict the flow of blood to her lungs. This would hopefully get her out of heart failure and allow her to grow for future corrective surgery. Sofia was kept in hospital and after 3 cancellations she had her first open heart surgery at 2 months old. 


Sofia shortly after her 1st surgery

The surgery went well but unfortunately Sofia caught a flu virus, which saw her re-admitted to intensive care with breathing difficulties. She was transferred to the High Dependency Unit at the Leicester Royal Infirmary while she recovered. She spent a month on CPAP support. 




Sofia on CPAP at Leicester Royal Infirmary

Unfortunately as she began to recover from the flu virus, her breathing problems didn’t improve and at 3 months old, she had her second open-heart surgery to make her PA band tighter. It was hoped that this would improve her breathing difficulties but there were no guarantees. The alternative was for Sofia to be on CPAP until she grew big enough for corrective surgery, which could have been months. Thankfully the surgery worked. She went home 10 days later with an NG tube in place and has gone from strength to strength. 


With a lot of hard work we were able to remove Sofia’s NG tube when she was 5 months old. Her breastfeeding improved and she started the weaning process (Sofia had been part breastfed and part NG tube fed since 4 weeks old). She now eats like a horse! 
Sofia’s stay in hospital lasted a total of 13 weeks. It put an enormous amount of pressure on our family. Our other daughter Isabella, was only 2 years old at the time and it broke my heart having to be away from her for that amount of time, it was the first time I had ever left her. My husband spent half his time at the hospital and half at home. Luckily my parents were incredibly supportive. They looked after Isabella and brought her to see us most days. The wonderful family accommodation that Glenfield provides was a real help as we live one and a half hours away.  My husband would otherwise have had to travel at least 3 hours a day. Whilst the situation was far from ideal, the staff at Glenfield made things so much easier to bear.  We consider them to be our very special extended family.

Sofia will need major heart surgery when she is 3 or 4 years old to correct her heart problems. Her weight gain is slow but steady and she is very prone to chest infections resulting in a couple of hospital admissions over the last winter season. She has regular check-ups at Glenfield Hospital to monitor her condition and has been doing very well. She now needs to grow for her next surgery.



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