In a bedroom of Gemma and David Bradley’s home there are all the signs of an impending happy event. There are boxes of nappies, baby bottles and dummies.
But it’s a room that Gemma can’t bring herself to go into - and in which David has started to store items of premature clothes in preparation for the birth of their baby girl - who, they have been told - will not live beyond “seconds, minutes or hours at most”.
The couple’s much longed for first baby has been diagnosed with Trisomy 18 - a chromosonal disorder which doctors have described as “incompatible with life”.
There is a strong possibility Lily Rose may even be stillborn - and as Gemma feels her baby girl kick, punch and wriggle in her tummy it is a diagnosis she, understandably, finds it extremely difficult to come to terms with.
“Each time she moves, I think ‘Go on, my wee girl’. A good part of me hopes the doctors are wrong. It’s hard not to cling onto that hope,” Gemma, who is 31 weeks pregnant, said.
Tina Donnell knows exactly what it feels like to be in Gemma’s shoes. On December 19, Tina and her family should be celebrating her third child’s first birthday.
Instead the family will be marking the birth, and death, of her baby son Max with a special ‘Angelversary’ celebration.
“Last year was just awful - so this year we want to make it special. I have two other children Annaliese (7) and Alex (6) - so we have ordered a cake, and we will be releasing balloons for Max.”
Max also had Trisomy 18 - a condition which affects one in every 5-6000 live births in the UK. He lived for just 33 precious minutes - but those minutes have made Tina determined that the phrase “incompatible with life” is no longer used in connection with Trisomy 18 (also known as Edward’s Syndrome) babies.
“He lived for 33 minutes,” Tina said. “He had a life. His life was limited, but he had a life.”
The two women have joined forces through what has been, and continues, to be a very difficult time in their lives so that no other women will have to experience what they had.
“My biggest wish,” Tina said, “is that some support is out there for women. That the information is out there. That we aren’t left to go off and research ourselves and find out exactly what it means.”
While no definitive diganosis of Trisomy 18 can be given without in utero testing - such as amniocentesis or CVS - the markers for both women were identified during their foetal anomaly scans.
“When we had our scan, we were asked to come back.
“They couldn’t find Lily Rose’s stomach - but we were told it was okay because it could be that she hadn’t eaten or wasn’t hungry,” Gemma said.
“But when we got home - and were called back for the next day - we knew something was wrong.”
Thus followed the devastating news that baby Lily Rose had T18 - but the Bradleys were left to research the horrible truth of the illness alone.
“We were told to go away and Google it. There was no support. There was no counselling. We were just left in limbo.”
The couple were asked if they wished to confirm the prognosis with a amniocentesis, but having concerns about the increased risk of stillbirth after the procedure, Gemma refused.
“They told me: “If Lily Rose has Downs Syndrome we will take her to Belfast and will operate but if she is a T18 baby you will just have her here.’
“I thought hang on a minute. This is my first baby. We tried for eight months to have her. We were undergoing tests for fertility treatment. The day we found out we were pregnant we were just over the moon. For them to tell me this - hold on, you will operate on a Down’s baby but not for her? Why?”
Tina believes the system in the UK “writes off Trisomy 18 babies before they are born”. While some children can live with intense medical interventions, the practice here is simply to provide palliative care.
The diagnosis of Trisomy 18 has had a devastating impact not only on Gemma and Tina but also on their families. Gemma’s mother Bernie Holmes said her entire family are living in a state of limbo.
“It’s like a bomb has gone off in our lives. The only thing I can compare it to is like having someone with cancer and just waiting for them to die.
“But you can nurse that person - care for that person. Gemma is the only one who can look after Lily Rose. I just think it was while for them to say to Gemma, your baby is T18 and then to tell her to and look it up...” she said.
Both women are hoping that by joining forces they will be able to offer each other and other women support.
“There is so much we want to do - and we can do it,” Gemma said. “We want to be able to have the information at hand for other mammies so that no one is sent off to Google the condition again.
“We want to ask the Trust and other organisations why counselling and support is not offered.
“We would like to see anyone who gets a fatal diagnosis for their baby to get a dedicated midwife. You are going from pillar to post and explaining everything over and over again - and some of them don’t know about it.”
“There is so much we could do,” Tina said.
For now both women have to continue to deal with their grief and Gemma lives in hope of a miracle for baby Lily Rose.
She has been warned she could go into labour at any time - a thought which fills her with fear. “I just want to hold on to her for as long as possible,” she said.