Darla-Rei Aidi Charlton

Hi my name is Sophie and I am Darla-Rei’s mummy I have decided to start a go fund me to help towards Darla-rei’s funeral so that a very special little girl can have a very special send off. And so we can also raise awareness of CDH as it is not spoken about often.

Darla-rei was diagnosed with CDH (congenital diaphragmatic hernia) at 20 weeks 18/09/2024 This went from the being a joyful and exciting moment to the worst day to ever happen to both of us as parents.

At 20 weeks+2 we had seen the fetal medical team and Darla-Rei’s diagnosis was confirmed to be right sided CDH we also was informed that her liver and bowel was up in her chest squashing her lungs and pushing her heart to the left of her chest and given 20% survival rate for our baby girl.

We did a lot of research on diagnosis to brace myself on what may be to come. We had been told from the beginning of our journey there is a high chance she may not survive but we had hope.

We had a lot of deciding on what is the right decision for me to do? Do I get the screening for Edward’s and Down’s syndrome and possibly lose baby girl after the process? Or do I wait it out till full term in hope baby girl survives birth and her operations? Unfortunately every route had a complication risking losing our baby girl.

We had been seen by the surgical specialist team and the outcome doesn’t look too great. They told us there is a very low survival rate for Darla-Rei with how severe and very rare her condition is. All I took in was us losing our baby everything else that was said was just a blur. She had an estimated 19% lung capacity on one of her lungs and the other only just being lung tissue meaning she will possibly struggle a lot when she is born and more chance of not making it.

Whilst pregnant Darla-Rei was thriving and very active with a very strong heart beat we was always told this was because of my placenta but we hoped she would be just as strong when she was born.

Every scan we went to Darla-Rei’s condition stayed the same it never got worse but didn’t get any better the more she grew this gave us more hope that everything would be fine once she arrived into the world.

30/01/2025 came round and Darla-Rei was born at 1:48am she was instantly hooked up to ventilators and oxygen to help her lungs and taken straight to the NICU but after a hour a neonatal nurse came round to tell us Darla-Rei is really poorly and doesn’t think she’d survive but they would try their hardest to get her oxygen levels up they tried for another 2 hours before we could see her. Then at 5am we was told there was nothing much they could do so at 6:30 we got her baptised and was able to have cuddles with her before we had to disconnect her from all the tubes she was connected to.

Then at 9:05 it was confirmed that Darla-Rei had gained her very special wings and left us to go to heaven she put up a strong fight in the very short time that she was with us and we are very grateful to have had such a beautiful strong baby girl.

In memory of our beautiful baby girl

Darla-rei Aidi Charlton

30/01/2025