my story is a little different to average, me and my husband went along to our first scan when I was 12 weeks pregnant we both felt very excited, but also a little anxious as would any first time parents when we went into the sonographer room we were told the baby was at higher risk of having Downs Syndrome, so we had 2 options either do nothing and wait and see or I could have a CVS where they take some fluid from the placenta and test it then we can have a definate answer whether the baby will be Downs or not,. We decided to go ahead with the CVS, we had to wait 24hrs for the results it felt like a lifetime! but they came back negative so we carried on with the pregnancy as normal. then at our next scan at 20 weeks we were told the babys kidneys looked larger than average, my husband has got polycystic kidney disease (PKD) which is hereditary, so the docs told us it was most likely the same, I then had to have scans every 2 weeks to check that her kidneys were’nt deteriorating further, but we wouldnt know for certain until the baby was born until they could scan her. my pregnancy just seemed like one thing after another and I dreaded going for the scans in case they found something else wrong! in the end i must have had at least 10 scans! my due date came and went and at 42 weeks I was induced and my princess Evie was born on 13th march 2011 at 1:50am weighing 8lb 7oz. everything seemed perfect she was scanned for her kidney disease and they confirmed the problem but were not too worried as it didnt cause problems until adulthood, so we were sent home as a perfect happy family, over the moon! until she was 4 days old, it was my husbands first day back at work I was alone with Evie for the first time struggling with breastfeeding etc, but Evie just would not wake up whatever i tried she would just not wake up I contacted midwifes, health visitors etc. but they all said not to worry babies are very sleepy in the first few days but I was worrying I just knew something wasn’t right. When my husband came home he thought the same, I took her upstairs to put her pyjamas on and noticed when I took off her top that her breathing in her chest looked very strange as if she was struggling to breathe also her head was bobbing back and forth with every breath! me and my husband thought enough was enough and we rushed her to the nearby childrens hospital A and E in the car on the way Evie woke up and was crying for the first time all day! when we got there we were seen straight away the nurse instantly rushed her into another room and then what seemed like a million Doctors appeared from nowhere sticking needles in her and hooking her up to moniters I was just sobbing uncontrollably, thinking I should have brought her sooner but the doctors said we took her just at the right time as if we had left it any longer she would have died whereas if we had took her sooner they may not have found the problem, after an x ray she was diagnosed with left sided CDH she was put straight into intensive care and on a ventilator the next day she had her repair op and she recovered so quickly they predicted she would be in intensive care for 2 weeks after the op but she was in there just 2 days until she was breathing alone! she then got moved onto the neonatal ward where she grew stronger everyday the nurses were amazed at how well she was doing and how rare this case of CDH was with it not being diagnosed in pregnancy especially as I had loads of scans. She was discharged from hospital nearly 3 weeks after going in after also contracting MRSA and a wound infection, but thats another story!, she is now 6 months old and the most precious thing in my life she is just perfect, and also every single nurse and Doctor who cared for Evie in the sSheffield Childrens Hospital were absolutely fantastic, we will never be able to thank them enough for saving our daughters life ad caring for her so well.
- 0800 731 6991
- committee@cdhuk.org.uk