Thanks for taking the time to visit my JustGiving page.

We have decided to try and raise some money for Alder Hey after everything they’ve done for us as a family. 

I found out I was pregnant last October, all was going well until my 12 week scan where the NT screening picked up that our baby had 7.9mm of fluid behind their neck (the normal being below 3mm). This then led to further tests (CVS test), which picked up our baby girl has Turner Syndrome. We were then given a less then 10% chance of survival, with less than 2% chance of even making it to 16 weeks. We decided to carry on and let our baby decide what she wanted to do. Our baby carried on fighting, and at 18 weeks we found out she had potentially 2 heart conditions (a hypoplastic aortic arch with a coarctation, and hypoplastic left heart syndrome). Our worlds came crashing down and we were constantly being told that our baby more than likely won’t make it. Fast forward to 36 weeks and after scans every 2 weeks at the Fetal Medicine Unit at the Liverpool Women’s Hospital...my waters broke and I went into labour. Emelia was born on the 31st May 2019 by emergency C section, and after she stopped breathing twice she was rushed round to the neonatal intensive care unit whilst she was waiting for a bed to be transferred to Alder Hey. 

Emelia didn’t have an easy start, she was suspected to have Sepsis so was started on antibiotics straight away, she was put on prostin (the medication that was keeping her alive as this was keeping the duct open to allow blood flow whilst her aortic arch wasn’t working), and she also had jaundice constantly (on and off the lights approx 5 times). She had an echocardiogram which confirmed Emelia’s heart condition (hypoplastic aortic arch with a coarctation), NO HYPOPLASTIC LEFT HEART SYNDROME which was such a relief, but still heartbreaking, as HLHS is unfixabke and requires numerous palliative surgery’s. 

Emelia was transferred to Alder Hey at 3 days old, and from then on was cared for by the amazing staff on ward 1C. The staff on this ward cared for Emelia like she was their own daughter, and looked after Chris and I like we were family. I can’t explain how amazing they all were, and the hospital provided me with 3 free meals a day from the restaurant as I’m a breastfeeding/expressing mother. Emelia had A LOT of tests and scans, and countless heel pricks and attempts at bloods (which were incredibly difficult as Emelia has a generalised oedema), and after one of her scans at 16 days old revealed the prostin had stopped working and her duct was closing over, her surgery was organised for 2 days later. 

Emelia went down for her surgery on the 18th June at 8:30am, the hardest thing as a parent I’ll ever have to do was hand over my baby in the anaesthetic room, knowing the risks of such a complicated surgery. After 9 hours, we finally got a phone call to say we could go and see her in intensive care and that surgery had gone well. Seeing her for the first time after her surgery was heartbreaking, over 20 wires coming out her tiny body, on 13 different medications including a sedative and paralysis drug to keep her sedated and perfectly still. I can’t explain the feeling of touching your baby’s hand and her not responding, no reflex grabbing your hand back. It was like looking at a doll. Emelia’s chest was left open to help with swelling, meaning her heart was exposed with just a see through dressing on top. Her chest was closed the next morning, and she was taken off ventilation 2 days after that. Our little girl absolutely smashed it, and was out of intensive care after just 4 days! She was taken back to the ward where we were starting the journey towards coming home. It was a long wait with a few hiccups along the way but our baby girl took to feeding again amazingly, and all her tests came back positive....then just 9 days post surgery we were discharged!! 

We have a long road ahead of us at Alder Hey, multiple appointments and check ups for her heart, her Turner syndrome, her neck, her eyes and her hips but we’re embracing it all and taking every day as it comes. We can’t thank Alder Hey enough for what they have done for us, from the surgeons to the cleaning staff, everyone made such a difficult time bearable.