Archie’s death leaves devasted family grateful for loving care
WHEN Rhiannon Cullen fell pregnant she couldn’t wait to become a mother for the first time.
However, during her pregnancy the 27-year-old who lives in Swansea city centre found out that her unborn child had a form of heart disease.
When little Archie was born in April this year, he had several scans and the family also discovered that he had a genetic condition where one arm of the chromosome 6p was duplicated.
On July 2, 2020, Archie underwent an operation and tragically passed away.
He had spent most of his short life in hospital and, because of coronavirus, none of his mum Rhiannon’s family had been able to meet him.
Rhiannon is now speaking out to try and raise awareness of her son’s condition.
“The day I got told the news is something that will haunt me for ever, but I know that the staff did their very best to save my baby’s life and pushed so much to give him the best care,” Rhiannon said.
During her pregnancy Archie was diagnosed with a possible of three congenital heart diseases.
When she found out, Rhiannon said that she instantly thought she was going to lose him.
“It broke my heart,” she said. “When you’re pregnant your emotions are flying everywhere. My pregnancy was horrific, emotionally I was distraught all the time and I couldn’t focus some days.
“His birth was planned for Bristol to be close to all the heart specialists to start him on a drug called Prostin to keep the duct of the heart open until he was big and strong enough for surgery.
“When he was born he had further scans which found his condition was pulmonary atresia (a form of heart disease) and he had many other complex bits that didn’t help.
“On May 13 he underwent surgery, and this was successful. The same day we learned that Archie had a genetic condition where one arm of the chromosome 6p was duplicated.
“This could have meant so many things for Archie. He might have had learning difficulties, disabilities or behavioural problems.
“The condition is so rare that not even the geneticists were aware of what Archie’s problems could be,” she added.
“Archie had a routine echo scan of the heart to see how it was functioning but unfortunately they found that Archie had aortic valve stenosis.
“He got transferred back to Bristol to undergo another operation to balloon the aortic valve in an attempt to prolong his life.
“He underwent the operation and unfortunately during this Archie went into cardiac arrest and remained asleep.”
The 27-year-old said that the last month had been really hard for herself and Archie’s dad Rob Kinnear.
“It still doesn’t feel real if I’m honest. Because of Covid it was really hard for people to be there so none of my family met him. The day he passed away I was in Bristol on my own.
“That was really hard. I was staying in accommodation across the road from the hospital. They rang me, I could just tell in the consultant’s voice that it wasn’t right.
“I couldn’t absorb it. They took me to the place they were working on him and I felt like I was in a film.
“It was horrific. When they told me he had passed I couldn’t look at them, I just ran out of the hospital.
“The nurse phoned Archie’s dad and everyone came up to say goodbye. Most of my family only held him then when he had passed,” she added.
A JustGiving page has been set up to raise money for the Bristol Royal Hospital for Children and The Grand Appeal charity which provided the family with accommodation while Archie was in hospital.
“The staff in PICU (paediatric intensive care unit) were amazing and always went above and beyond for us and Archie. The care they gave him and other babies is next to none and I know without them my baby wouldn’t have made it to three months.
“In the beginning I had a lot to focus on, I was raising money for the hospital and planning the funeral. It seems to be getting harder.
“When you’re pregnant you get so excited and you buy so much stuff.
“My flat feels empty and horrible. I should be awake at night, he should be crying, I should be stressed.
“I did have a lot to focus on at one point but it’s starting to hit me a bit now and I’m planning on doing some fundraising to help me focus.
“Rob is struggling. He works so he can keep his mind occupied. We are trying to stay strong for each other,” she added.