Baby born with a rare life-threatening condition beats the odds

Little Lillie-Faith Hitchens will be 20 weeks old on Friday (9 Oct)...a major milestone for the tiny tot born with a life-threatening condition.

But Lillie-Faith is a fighter, beating the odds after being diagnosed with congenital diaphragmatic hernia (CDH) - a rare birth defect affecting around one in every 2,500 babies.

Only half of babies diagnosed with CDH survive.

Three days after being born, Lillie-Faith underwent complicated life-saving surgery and a further operation just weeks later - spending the first 53 days of her young life in hospital.

CDH occurs when an unborn baby's diaphragm - the sheet of muscle separating the chest from the abdomen - fails to form correctly, leaving a hole which allows the abdominal organs to move up into the chest cavity.

There is no known cause or prevention. Lillie-Faith's mum, 24-year-old Taylor-Jessica May first found out something was wrong with her unborn daughter during her routine 20-week pregnancy scan at Nuneaton's George Eliot Hospital. "They spotted an abnormality and I was sent to Birmingham Women's Hospital where they told me it was CDH, there would be complications and they didn't know if my baby would survive," explained Taylor-Jessica, who lives in Kingsbury. "It came as a terrible shock to me and my partner Mark." Lillie-Faith weighed just 4lbs when Taylor-Jessica was 36 weeks pregnant and the medical team decided to induce labour. But the birth did not run smoothly and Taylor-Jessica underwent an emergency caesarean section. "Lillie-Faith was whisked away to intensive care and I didn't see her for two hours. "But she was doing so well we were transferred to Birmingham Children's Hospital the next day. "At three days old, Lillie-Faith underwent major surgery to untwist and move her intestine back into her abdomen, repair the hole in her diaphragm and repair her oesophagus. "Her lungs were tiny because they had been crushed by her intestines and they didn't know how she had even survived." But during the operation Lillie-Faith's heart rate dropped dramatically. "The surgeons decided that they couldn't close her up until she was in a stable condition. "Fortunately, they could do it two days later." Lillie-Faith's condition remained stable and, two weeks later, mother and daughter were moved back to George Elliot Hospital to recuperate before going home. But, just a week into their stay Lillie-Faith's condition deteriorated and she began vomiting. Doctors diagnosed a blocked bowel and mother and baby were taken back to Birmingham Children's Hospital for Lillie-Faith to undergo further surgery. Lillie-Faith spent a total of 53 days in hospital before finally being allowed home - but only after Taylor-Jessica and her mum Melanie, who lives in Baddesley Endsor, had completed life support training. "It was very hard at first, Lillie-Faith had terrible reflux problems, causing her pain. "She had to sleep sitting with a wedge behind her so she didn't choke and was fed through a tube fixed to a pump overnight. "But we are very lucky to still have her, lots of children with CDH don't make it." Lillie-Faith is making progress and now feeds from a bottle, supplemented by nutrients to help her gain weight, although she still has reflux. "Lillie-Faith has good and bad days and it's often one step forward then three steps back. "We don't know what the future holds, she could re-herniate or have more bowel blockages, but hopefully not. "We just take each day as it comes." Taylor-Jessica wanted to share Lillie-Faith's story with Atherstone Nub News to raise the profile of CDH and charity CDH UK, which supports babies, children and their families affected by the condition and campaigns for study and research into the cause, prevention and better treatments.