Hey there, Delilah – family explains the power of the Gift of Life this Organ Donation Week | News

It’s not been an easy journey for Delilah and her parents, Chloe and Matthew from Birmingham, since they welcomed her into the world in 2021.

Sadly, she was born with Stage Five kidney disease, also known as ‘end-stage failure’. Her vital organs were severely damaged.

Chloe knew Delilah was unwell during a routine scan when doctors noticed there was no Amniotic fluid surrounding her baby.

She recalled: "Delilah was being closely monitored and they found that at 34 weeks, she was no longer growing, so we had to have a C-section."

After the birth, Delilah stopped breathing and doctors needed to resuscitate her.

Chloe said: "It was just horrible. Lots of doctors rushed into the room and we weren’t sure what was going to happen.

“I couldn't hold her as she had to be sent straight to the Neonatal Intensive Care Unit (NICU) at Birmingham Women's Hospital."

While at NICU, a consultant from Birmingham Children's Hospital visited mum and dad to explain more about their daughter’s condition.

Chloe explained: "It was a complete shock. I've had four healthy children, so I just didn't expect something like this to happen. However, the doctor who visited us was so kind and explained everything in a way that we would understand."

The couple knew their daughter would need a kidney transplant when she was old enough. In the meantime, Delilah was given several medications and was regularly admitted to the Children's Hospital's specialist Renal Unit, where she had a nasogastric (NG) tube and haemodialysis.

When she had gained enough weight at two years old, doctor's put Delilah on the transplantation list. During this time, Matthew was also preparing to donate his kidney in case a donor wasn’t found sooner.

Chloe recalls: "We had gone on a family day out to the zoo and just after we had got home we had a call to say that there was a kidney for Delilah. We were just lost for words. We couldn't believe there was a kidney just a month after being on the waiting list."

The family immediately travelled to the Children's Hospital for Delilah's procedure, which took around four hours.

Chloe said: "Since having her transplant, life has completely changed for us. Delilah was so poorly, she was always tired and getting sick. It made doing anything as a family very difficult. She was also very underweight and had trouble speaking, so needed Speech and Language Therapy.

"All this went away after her transplant. She is healthy, gaining weight, speaking well and just doing things that all three-year-olds should be able to do."

Chloe and Matthew are sharing their daughter’s story for Organ Donation Week to encourage everyone to register their organ donation decision and let their loved ones know their choices.

Matthew said: “Anybody can be a donor, even living. All it takes is a willingness to help others. With more people registering their decision, there would be more people like Delilah who is now experiencing a whole new adventure, living the fullest life after organ donation. There is no better gift than the gift of life.”

Chloe said: "I think it's really important that people have the conversation about organ donation. One person can save up nine lives so being a donor really is the most selfless thing anyone can do.

“We've seen first-hand in Delilah the difference it makes. We could never thank our donor and their family enough."

She added: "I also just want to thank the staff at the Children's Hospital. They have gone above and beyond for Delilah. All of the nurses and doctors are like our second family now. There are no words to describe just how incredible they are."

Dr Ramnath Iyer, Delilah’s Consultant, said: “It was a very hard life for Delilah and her entire family since she was born and they had to go through several challenges including several hospital admissions and regular haemodialysis. She was one of a few children who needed haemodialysis at such a young age.

“It is so gratifying to see the transformation in her after the gift of a transplant. Organ donation truly changes lives not just for the child but for the entire family. They now have their life back.”

Sarah Davies, Renal Transplant Clinical Nurse Specialist, said: "Delilah and her family were a pleasure to work with for transplant work up and we all shared the joy when the offer of a kidney came through for her. 

“The gift of kidney has transformed all of their lives, allowing them to be a family without the restrictions of dialysis.  Delilah can look forward to growing up with her friends and living life to the full"

Currently 7,734 people are waiting for a transplant in the UK. All desperate for that life-changing call that a donor has been found.

Register your decision at https://www.organdonation.nhs.uk. Just two minutes now could mean you save up to nine lives.