Alice was diagnosed with the rare Congenital Diaphragmatic Hernia (CDH) condition at her twenty week scan. This condition, which only affects 1 in every 2,500 babies, is where the diaphragm doesn't form properly in early gestation.
As a result, the organs in the lower part of the body can move upwards into the chest cavity and these in turn cause problems with the lungs forming and growing, and sometimes the heart too.
From that day onwards all our lives changed.
During the remaining weeks of pregnancy Alice was closely monitored between Warrington Hospital and Liverpool Women's Hospital both of which gave great medical and emotional support. We knew throughout this period that she had a 50:50 chance of surviving the CDH but we wanted her to be given the chance to live. She lived happily inside me kicking and moving around freely due to the amount of fluid she had to live in.
Alice was born naturally after I was induced at thirty eight weeks which is deemed the best time to deliver a baby with CDH. She was ventilated by the medical team immediately after being born and taken from us to the Intensive Care Unit. In those fleeting moments before she went to the Neonatal Unit, Alice was breathing by herself without drugs or painkillers as she fought for her life, moments which we now treasure.
Three hours later we understood how poorly Alice now was and how much worse her situation was compared to what had been seen on her scans during pregnancy. Deep down we knew no matter how hard she tried and however hard the hospital staff and equipment worked, our precious little girl could not survive and overcome the problems she was born with.
In the short 6 and ½ hours Alice lived she was in a Giraffe® Incubator. If she'd had a chance of life then the medical information during pregnancy and the care and equipment in the hospital at birth would have helped her survive, along with the desire for life she had in her.
We know how important it is for babies born with difficulties to have the right care and equipment. That is why we have already donated a Giraffe® Incubator to Liverpool after raising £14600 and are now continuing to raise funds to purchase life saving equipemnt for neonatal units in the north of England.
In future we are hoping to fundraise for more research to be carried out into Congenital Diaphragmatic Hernia as it is still very rare and little is known about the condition.