HEARTBROKEN PARENTS OF UNBORN BABY GIVEN 1 PERCENT CHANCE OF SURVIVAL START TO ARRANGE HER FUNERAL – AND SHE LIVES. TOLD their unborn baby had a less than one per cent chance of survival, devastated parents have told how they cancelled their order for a new pram and cot and instead set about arranging a funeral. Because after months of investigations, Natalie Brown, 32, and partner Peter Gordon, 42, had been told that a rare terminal condition meant their daughter Elsie would either be stillborn or die shortly after birth if they did not agree to termination. But to everyone’s complete shock the baby was born full of life. In fact Elsie proved so well that she was discharged for her overjoyed parents to take home just five days later. Natalie said: ‘It feels like a miracle after being told they were 99 per cent sure she would die. In the end we had to try and accept it and prepare for the worst. ‘We had even started to arrange her funeral. I have to keep pinching myself. I can’t believe how lucky we have been to have her home. ‘We had no cot and pram because everything had gone back. When doctors tell you there is just a one per cent chance your baby will live you need to be prepared for the worst.’ Now the couple, who both work as teaching assistants, are waiting for the original terminal diagnosis to be ruled out as they suspect Elsie’s condition is in fact a much less serious joint disorder affecting just her legs. But Natalie has praised medics for the care she received and says she is just delighted and relieved to have her daughter alive. The drama started at the 20- week scan when Natalie and Peter were told there were abnormalities with their baby daughter’s legs. She explains: ‘ Scans revealed she had club feet and her knees and hips were fixed in a contracted position, a bit like a kneeling buddah. Nobody could tell us why.’ The couple were given the option to terminate their pregnancy then, but refused to make any decisions until they knew what was causing the abnormalities. Natalie explains: ‘ There was no way we were going to abort our baby just because she had club feet or problems with her legs. ‘Disabilities are not a barrier to a happy life. But the doctors were concerned that the disabilities may have been caused by a genetic condition with much more serious implications.’ Eventually tests pointed to a rare nerve condition called Fetal akinesia deformation sequence. It’s fatal and begins by fusing limbs, before shutting down vital organs causing death in unborn babies. If the babies do survive birth they only live a short time after. Natalie says: ‘ We were devastated. No test could tell us for certain that is what Elsie had. We would just have to wait and see how it progressed for the rest of the pregnancy. I was advised to look out for reduced movement, a sign other limbs were fusing.’ The couple remained positive, but when at 32 weeks their baby’s movements slowed dramatically, Natalie returned to the hospital for more scans fearing the worst. Tragically they revealed that the baby’s arms were now still, leading medics to conclude she did have the condition and it was spreading. Natalie says: ‘ We were taken into a side room after the scan and told our baby had a less than one per cent chance of survival. ‘We cried and cried because we hadn’t given up on her but now it felt like all hope had gone. I desperately wanted to believe they were wrong but you cannot ignore what the professionals are telling you. ‘The only comfort we had was that we had given her every chance by not terminating the pregnancy at 20 weeks.’ The couple, who already had three children between them by past relationships, faced the heartbreaking task of telling Natalie’s daughters aged five and seven and Peter’s daughter aged eight. Natalie says: ‘ The girls were so excited about having a baby sister. But after being told she had a one per cent chance of life we had to try and prepare them in some way for the fact Elsie wasn’t coming home. ‘We called them together and gently told them that their sister would be going straight to heaven to watch over us all. ‘The girls were confused and upset but very accepting in that way that children can be.’ Heartbreakingly they than had to prepare for a birth and a funeral. Natalie says: ‘ I just couldn’t face it so Peter spoke to the undertakers about our situation so they were ready to organize everything when the time came.’ The couple also cancelled their Mothercare delivery of a new pram and cot and packed away the new nursery. Natalie said: ‘ It was too painful to see everything in there knowing it would never be used.’ At 39 weeks Natalie was admitted for an induction at the Worcestershire Royal Hospital The parents agreed that their baby should be offered comfort care only to ease any suffering in her final moments. Natalie says: ‘ It was heartbreaking to be discussing things like that while I was in labour. All I hoped was that she might live long enough for us to meet her and have a cuddle.’ It was for this reason that Natalie opted to have her labour monitored, meaning if the baby showed signs of distress action would be taken to assist her delivery. She explains: ‘ Because nobody expected her to live they said they were happy for me not to be monitored. But I felt I needed to know if my baby was coming into the world alive or dead even if she wasn’t going to live long. ‘We had got through the whole pregnancy, I didn’t want her to die during birth if there was a chance I met get to hold her if only for a few minutes.’ Finally after an 18 hour labour and baby in distress she was rushed into theatre for an emergency section. Natalie says: ‘I thought it was the end. But when they lifted her our she was crying and moving her arms and basically doing all the things we had been warned she wouldn’t do.’ They were supposed to hand her to me to pass away in my arms but her cries seemed to be getting stronger. ‘I was exhausted but kept thinking: ‘ They’ve got it wrong. She’s not dying or they would have given her to me by now.’ Eventually she was briefly shown to her shocked parents and rushed to special baby care for assessment. Natalie recalls: ‘Her eyes were wide open looking around. It wasn’t what I expected at all.’ Finally the couple went to see their daughter who was breathing unaided but being monitored closely. Natalie says: ‘ We were astonished to be told things were looking good and they were very optimistic. Apart from the issue with her legs there appeared to be nothing wrong with her.’ Just five days later they took her home. Natalie laughs: ‘We had nothing ready for her but none of that mattered. We just couldn’t believe we had our baby home. ‘Our daughters were over the moon and kept asking if Elsie had changed her mind about living in heaven. I told them ‘yes she has.’ Elsie is now 11 weeks and thriving. Consultants are yet to make an alternative diagnosis but have told her parents that they are confident she no longer fits the criteria for fetal akinesia deformation sequence. Natalie says: ‘ We are in no way at all angry about what has happened, just so pleased that they were wrong or Elsie wouldn’t be here today. ‘It is such a rare condition and so very hard to diagnose that we know the medics were only doing their very best by telling us what all the signs pointed to. ‘Thankfully it doesn’t appear now to be the case and we couldn’t be more delighted about that. ‘The care we have received has been absolutely amazing.’ ENDS
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