- My Story
Our son Harley was born on the 10th of October 2015 with the horrible and severe condition known as a Congenital Diaphragmatic Hernia (CDH)
CDH effects babies in many different ways but generally it is in relation to the diaphragm not forming properly which can leave a gap between the chest cavity and the abdomen and unfortunately the rate of survival is usually only 50%. In Harley's case this has caused his stomach, bowel, spleen and part of his liver to come up into his chest which has pushed his heart over to the right side. This, in turn, means his lungs did not have much room to form.
Harley spent 98 days in Hospital and to this date has had 3 major surgeries, including being on an ECMO machine for 8 days which worked as an artificial lung, helping oxagenate his blood. He had a food avesion and came home with a feeding tube, however after months of working with Harley we managed to help him over this hurdle and now he loves to eat. However due to his small lungs he struggles to put on weight so this is a constant battle we face. Also due to his lung capacity, harley is on an inhaler and also needs other medication at times to help with his breathing.
harley also has weak muscles on his left side and has been left with quite a large swelling on that side and his chest has also caved in which could be the reason why his heart has never fully moved over to the left side. His core muscles are also weak which means he falls alot, and for a boy who cant sit still, its tough to manage.
We face day to day troubles with Harley and although there are times where you can look at Harley and forget anything is wrong, it can come back to us very quickly when he gets a cold or a virus as Harley can react differently than others to these otherwise small illnesses.
CDHUK are an amazing charity who have helped us along the way with Harleys condition. The support network we have been a part of has made such a difference in being able to cope with the last 2 years and we couldnt have done it without them.
CDHUK are able to research the causes of CDH and hopefully, one day, we can find out why this happens and then a way to prevent it.
So i will be raising funds for CDHUK in doing something that harley loves to do but can struggle with and that is running. I will be attempting to run 26 miles throught the month of June and hopefully I'll be able to raise some funds towards CDHUK.
If you are able to spare a little then please do, all proceeds go straight to CDHUK and in the name of Harley.
Pamela ( proud mum of an amazing super hero)