A three-year-old girl from Portsmouth who could not breathe on her own when she was born will run the Mini Great South Run to celebrate how far she’s come and to raise cash for charity.
Maya Guinoubi was born with a rare condition called Tracheoesophageal Fistula & Oesophageal Atresia (TOF & OA) and in her short life has had 10 operations, the first when she was just seven hours old.
The condition caused Dextrocardia, where Maya’s heart is placed on the opposite side and twisted. She also has an absent right lung and right pulmonary artery and was born unable to swallow or breathe on her own.
After she was born, Maya was transferred from Queen Alexandra Hospital to Southampton Children’s Hospital intensive care unit to have emergency surgery at just seven hours old. This was a five-hour operation and due to her complex anatomy it made the surgery more complicated and required the surgeon to repeatedly restart Maya’s heart by way of massage.
Maya recovered well and was discharged after eight days in NICU. However, she needed to be readmitted soon after due to problems with feeding and required emergency surgery 10 days later to stretch her oesophagus.
She was then in and out of hospital, spending months on the ward, before taking a drastic turn for the worse, with a very severe case of Tracheomalacia, a condition caused as a result of the TOF. It was soon realised that Maya needed airway intervention surgery. She had an operation at 10 months old and was able to breathe on her own for the first time in many months.
Even though the operation was successful, the complications of TOF are lifelong. Maya requires daily medications, food often gets stuck in the repair site in her oesophagus and the risk of choking is part of her daily life.
Maya is now an energetic, fun-loving three-year-old. She continues to struggle with feeding, suffers with chest infections and requires chest physio and daily medications to keep her out of hospital. However, she doesn’t let that get in her way and attends ballet and tap lessons.
Maya’s mother, Naomi, said: ‘She actually went into her first surgery just named “female infant” as I hadn’t had the chance to see her, touch her or hold her so didn’t want to name her until I saw her. I eventually got to meet her when she was 27 hours old in PICU, after a successful repair surgery. All I had until that time was a photo my husband had sent but she had so many wires attached you could barely see her face.
‘As a parent when you sign the consent form for any surgery you’ll always wonder if you’ve made the right decision and we definitely found this part of the process heart wrenching.
‘That first year was very difficult for us as a family, we also had a 20-month-old little girl to take care of and it was a very confusing time for her. Maya’s sister was being passed to and from family and friends to care for her so I could stay with Maya and my husband needed to work to support our family. I would get the chance to spend time with our other daughter Lilia at weekends while daddy would stay with Maya.
‘We really wouldn’t have got through that first year without the support of close friends and family.
‘Seeing your child resuscitated numerous times, physically in pain and unable to tell you how they are feeling, it’s truly heart-breaking but we look at Maya now and see how she overcame so many odds and our hearts burst with pride.’
Little Maya is now excited to run at the Simplyhealth Mini Great South Run on Saturday, October 20 with her best friend – grandad.
They will be raising money for the TOFS Charity, supporting children born unable to swallow, a particular charity for one of the rare conditions Maya was born with.
Naomi added: ‘Maya is excited to get a medal and tells us she will win. She is getting pretty competitive and is “training” in the local park to build up her stamina.’
Almost 2,000 budding athletes, school friends and families will take on the Mini Great South Run’s 1.5k and 2.5k courses, which start and finish on Clarence Esplanade in Southsea. The Simplyhealth Great South Run itself is on the Sunday.