The smile that stays with me - tragic Telford mother's story

Katyia Rowe, from Overdale, in Telford, was given the devastating news that her baby's brain had not formed properly and that he would never walk or talk and would need 24-hour care.

However, after seeing real-time moving scans of him smiling, blowing bubbles, kicking and waving his arms she made the decision to go through with the birth.

She had been overjoyed to discover last March that she was expecting a baby with her partner of four years, security officer Shane Johnson, aged 26.

She gave birth to her severely disabled son, Lucian, at the Royal Shrewsbury Hospital on October 23 last year. Weighing just over 6lbs, he tragically died just nine hours later.

But despite her loss, Miss Rowe says she has no regrets about going through with the birth because she is left with the wonderful memories of being a mother and cuddling her baby son.

The couple are now fundraising for the SANDS – Stillborn and Neonatal Death – charity.

More than £220 was raised for the charity during a Celebration Day to mark Lucian's life, which was held at St Mary's Church, Red Lake, last November.

Baby blue coloured balloons were also released in honour of the amazing few hours he was with his family.

Lucian was then laid to rest at Castle Green Cemetery, in Ironbridge.

Miss Rowe said: "This charity is close to our hearts. We were given a memory box from them at the hospital which contained everything from clay moulds and inkless wipes so we were able to make castings and take prints of Lucian's hands and feet, teddies, tea lights and much more, because of this we will have memories for a lifetime.

"Not only that, the SANDS charity also fund and equip the the family room at Shrewsbury Hospital so we were able to bathe Lucian in there and have our first and last night together as a family which we will keep in our heart always."

The couple have now set up a website www.lucian.johnson.muchloved.com as not only a celebration of their much-loved son's life but also to encourage people to donate to SANDS.

Training administrator Miss Rowe, 26, said: "We were devastated to be told our son's brain abnormalities were so severe they were life limiting and we should consider a termination. Further scans were arranged to assess the extent of his disabilities but when I saw him smiling and playing inside me I knew I couldn't end his life.

"If he could smile and play and feel then despite his disabilities he deserved to enjoy whatever life he had left, no matter how short.

"Just because his life would be shorter or different, didn't mean he didn't deserve to experience it.

"As long as he was pain free I vowed to let him enjoy his life both while inside me and outside, no matter how long that would be."

She said news that she was pregnant had initially been a shock but they were thrilled.

She added: "Shane and I were so excited and looking forward to the birth. We had so many plans for the future and could not wait to meet our baby.

"Our first scan at three months was wonderful. When we saw our baby on screen for the first time we fell in love straight away.

"As far as we were concerned everything was perfect."

The couple decided to marry when their son was old enough to walk down the aisle with them but the 20-week scan highlighted worrying complications. Following further tests, doctors told Miss Rowe and her partner that their baby's brain had not formed properly and he would be severely disabled.

They were then told the tragic news by experts at Birmingham Children's Hospital that their child would never walk or talk and would need 24-hour care.

The couple were offered the chance to terminate the baby at 24 weeks. But despite his poor prognosis, Miss Rowe said she was astonished to see him smiling, blowing bubbles, kicking and waving his arms during the real time 3D screening tests.

She said: "Despite all the awful things I was being told, while he was inside me his quality of life looked to be wonderful and no different to any other baby's, he was a joy to watch. I was told he would never walk or talk yet the scans showed him constantly wriggling and moving.

"As I watched I knew that while I was carrying him he still had a quality of life and it was my duty as a mother to protect that no matter how long he had left, he deserved to live."

Miss Rowe was told if her son survived birth his life expectancy could have been anything up to five years.

She added: "It didn't phase me at all. It was ironic because I had never considered myself particularly maternal but I wanted nothing more than to care for my son and give him the best quality of life possible. I was more than happy to dedicate my life fully to his care.

By Judith Sanders