Everley was born in 2017 weighing 5lb 15oz. A completely normal birth, no complications whatsoever. Over night in the labour ward she wouldn’t take a feed, she was sick, she was mucousy, but that was all ‘normal’ for a newborn, her stomach was hard and veiny but that too was ‘normal’. A day later we were released, still no improvement with feeding and she hadn’t passed her meconium. Our first night at home she spent choking on thick mucus and still not feeding, her stomach becoming more and more distended.
In the morning after our 4th phonecall over the night we were told to take her to the children’s ward. On arrival it was found her sugars were incredibly low. Everley was sent straight for an abdominal X-ray.
It took approximately 2/3 minutes to get back up to the children’s ward from the X-ray department, and in that time a team of doctors were sat waiting for us in the room. Everley was to be sent straight to Queens Medical Centre for emergency surgery. They weren’t sure what was wrong but her X-ray was black, they weren’t sure if she had even developed any bowels.
Within 15 minutes she was hooked up to drips, family was called and nurses were in and out assessing her. I remember the nurse coming in and telling us the next available ambulance was coming to us because the doctors were concerned her bowels were about to burst. I asked how would we know if they did, She replied ‘she would get very poorly very quickly’.
After an hour an ambulance arrived and blue lighted Everley, who was less than 48 hours old to Queens Medical. She was born on a Wednesday and the Saturday morning she had emergency surgery where it was found she had a bowel blockage called meconium ileus. Luckily none of her bowel had to be removed, just a clean out. Unfortunately the surgeon informed us the most likely cause was cystic fibrosis.
It took just over one week for the results to come back from her genetic test confirming the diagnosis.
Everley had her first drop of milk at 2 weeks old, only 5ml but it was a milestone. We spent 4 weeks in hospital learning how to do daily physio and administer medication.
2 years on and Everley deals with her CF like a warrior. She is pancreatic insufficient which means she has to take medication whenever she eats and she has CF related liver disease which has already progressed because of her CF. She takes 8 medications twice daily and has physio twice daily too.
But she is the most lovely, happy toddler there is, she doesn’t let her CF get her down!