This is our beautiful angel Gracie May Barrimore. She sadly passed away on 19th may 2014, at only six days old. She passed away due to a medical condition called CDH which means a congenital diaphragmatic hernia. This means the diaphragm doesn’t form correctly in the womb and causes a hole, which means some organs to herniate into the chest, which prevents the lungs from forming correctly which would mean severe breathing problems at birth. CDH occurs in approximately 1 in 2500 births. And are only giving a 50% chance of surviving.
It was on Christmas eve 2013 that we had our 20 week scan we couldn’t wait to find out if we was going to have a little girl or boy, we got called into the scanning room and my partner and I where beaming with excitement but that excitement was soon to be shattered. I knew something was wrong when the sonographer was spending a long time on one part of the baby I asked if everything was ok, and then she explained that she’s noticed a few problems and needed a second option, so told us to wait in a room for a consultant, we had to wait nearly an hour ( was the longest hour of my life ) then the consultant called us into the room and then we was told that our little princess had this life threating condition. We didn’t know how to feel. We knew nothing about the condition what so ever. We did our research as much as we could. And then we came across CDH.UK charity, they gave me so much support throughout my pregnancy they really where amazing, I started to feel a lot more positive about our little princess, and couldn’t wait to meet Gracie.
Gracie was born on 13th May 2014 at 12.25pm she arrived by emergency C-section as she was getting stressed when I was having contractions. I couldn’t see my baby straight away, didn’t get a hold we didn’t even get to hear her cry. There were about 20+ doctors around her all at once, it was so much to take in. and we were hit with every emotion. Ryan (my partner) went down to see her a few times that day and she seemed to be doing so well. I couldn’t see her due to having an epidural.
I got to see Gracie for the first time the day after she was born, she was the most beautiful baby I had ever seen, so tiny and wires and tubes covered her tiny body, was the most upsetting scene. We visited Gracie every day and for the first couple of days she seemed to be doing really well, then on day three she started to go downhill and stopped responding to treatment. Our hearts sank where a doctor came to see us and said that the outcome for Gracie really doesn’t look good and we need to consider that fact that she isn’t going to make it. They said they had one last drug to try but they didn’t think it would make a difference but we thought we should give her every chance. The doctors where correct and she started to go downhill very quickly. And the doctors explained that there was no more they could do for our baby girl, Ryan and I were distraught. So we came to the decision to turn our baby’s machines off. The worse thing a parent could ever do. She passed away peacefully in her daddy’s arms while he was reading “guess how much I love you” book.
Gracie was the most amazing little fighter I have ever met and she touched many people’s hearts. She will always live on in me and Ryan and we are very very proud of our little girl.
- 0800 731 6991
- committee@cdhuk.org.uk