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I am walking 20k on Sunday 2nd June in memory of my baby girl Iyla. She was born on the 7th August 2018 at 24 weeks weighing 1lb 4oz (660grams) and lived for just 73 days. She had chronic lung disease due to being born so prematurely which meant she was being kept alive on a ventilator. Iyla made a few attempts at breathing on her own which amazed us all. 

She also travelled to Tommy’s for a heart operation as she had a condition called patent ductus arteriosus (PDA) which is when abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries the aorta and the pulmonary artery are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation. This operation was scary but successful. 

We came back to St. George’s Hospital Neonatal unit but it wasn’t too long before the doctors told us she wouldn’t make it as her lungs were so damaged. It felt like my world was ending. 

We made the decision to take her to a hospice called Shooting Star Chase in Hampton after seeing it as we would have the time to be with her. And it wouldn’t be unexpected and undignified for our baby girl. I had seen her turn blue and have chest compressions 1 too many times before. That’s not the way I wanted her to leave me I wanted to comfort her, cuddle her and kiss her and that’s what I was able to do. 

The staff at shooting star chase are amazing, actual superhumans. They were there for not just Iyla but for the whole family. If we needed a hug, food or just a cup of tea they were there. We stayed at the hospice until Iyla was taken to the funeral directors. I really struggled to go outside and leave her at first but all the staff encouraged me and reassured me to just take my time. They even came to her funeral and still send me a text to check in on how we are all doing. 

As little as she was she made a big impact on a lot of people’s lives. And we all miss her so much everyday.

These hospices need funding so they can carry on being rocks for other families at the most heartbreaking times of their lives. So please donate this could happen to any of our children. 

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