A Sunderland couple ended the year with a poignant tribute to the baby son who enriched their lives during his short life.
Ever since Sam Wright discovered she was pregnant, she and husband Paul looked forward to the arrival of their first son, Joey.
But a scan at 21 weeks revealed their baby boy was missing a major part of his brain, a condition known as anencephaly.
With little hope of their son surviving birth, they initially made the heart-wrenching decision to terminate the pregnancy on the advice of medics.
But on the scheduled day of the termination, Sam was unable to take the pill she had been given, and after a long talk with Paul they decided to keep their baby.
Sam, a 31-year-old call centre advisor with EDF, said: “Everything was fine with the pregnancy, it wasn’t until my 20-week scan when the problems were spotted.
“We were told of the outcome and given two options - termination or carry on with the pregnancy knowing he wouldn’t survive.
“We’d decided on the termination, but when it came to actually terminating the pregnancy I just couldn’t do it.
“I just kept thinking who was I to decide whether our son lived or died.
“After the decision was made, I kept a diary of everything me and Joey did together throughout the pregnancy. If I went to the pictures with my friends, I would write how Joey and I had enjoyed a cinema trip together.
“I really took my time to enjoy my pregnancy and cherish every moment I had with Joey.”
The couple, from Broadmeadows, East Herrington, Sunderland, made the painstaking decision to carry on with the pregnancy with the hope of being able to donate Joey’s organs to help give the gift to life for others.
He was born on September 4 by Caesarian section and survived for just 81 hours.
Paul, 33, a mechanical engineer with Roballo Engineering, said: “When he was born he started crying which was unknown and he also had a sense of feeling in his feet, he also knew when his big sister Katie was in the room.”
For those precious few hours, Joey’s family spent every waking moment with him, holding him close, taking him for walks and playing with him – capturing those special moments on camera.
Sam added: “Katie has been our rock. She was so excited when we told her she was going to be a big sister.
“But after the scan, we had to break it to her, that her baby brother was very poorly and would not be coming home, he would be going straight to heaven.
“She is five years old and she has taken it all in her stride. She has really helped us through it all.
“Everyone has been saying how strong we have been. It still hurts but we always knew what the outcome was going to be.
“We all loved him so much, he had his own personality, he had such a cute little laugh and loved blowing bubbles.
“Those 81 hours with him will stay with us for ever.
“Not terminating the pregnancy was the best decisions we have ever made.”
Paul said: “It has been hard for us. When he died I was quite angry, I just couldn’t understand what we had done to deserve what was happening to us.
“And Christmas, seeing all the ‘first Christmas for baby’ ornaments, it was heartbreaking.”
In memory of their son, Sam braved the freezing waters on Boxing Day along with friends to raise money for Shine – a charity which supports people living with spina bifida and hydrocephalus and their families.
The couple would like to thank Dr Kim Hinshaw, from Sunderland Royal Hospital, and midwife Vicki Worth, as well as Leeds and Newcastle transplant team, transplant co-ordinator Michelle Pearson and Lynne, from Rosewood Ceramics in Sunderland, who took a cast of Joey’s hands and feet.
Joey’s family are urging people to sign up to the organ donor register in memory of their son.
Sam and Paul had decided before Joey was born they would allow his organs to be donated in a bid to save another person’s life.
However, despite transplant teams from both Newcastle and Leeds being on standby, his organs were unable to be donated.
Already, Joey’s story has urged others to sign up to become organ donors and the couple hope more people will follow.
Sam is also hoping his story will also raise more awareness of the importance of taking folic acid.
“Folic acid is so important for pregnant mums and while it would not have changed anything for me, it does reduce the chances of this happening.
“When we are ready to try again I have been told I will have to take a stronger dose.”
To become an organ donor, visit www.organdonation.nhs.uk