I planned my baby’s funeral, now he has just turned three
After a scan revealed SHELLY WALL’S son had spina bifi da she was told to prepare for the worst. Luckily she refused to give up hope
AS Shelly Wall stared at the ultrasound screen she could tell by the sonographer’s face that there was something desperately wrong with her unborn baby.
Shelly and her husband Rob, 49, were stunned at the 12- week scan when doctors broke the news that their longed- for child had a host of problems including spina bifi da, hydrocephalus ( fl uid on the brain) and was paralysed from the chest down.
After being told their baby was unlikely to live they were offered a termination.
“We were in complete and utter shock,” says Shelly, 43. “I’d had a miscarriage six months before and this baby was very much planned and wanted. We were so excited to see it for the fi rst time at the scan.
“But when the image came up on the screen and everyone in the room went quiet I knew there was something seriously wrong. Then they told us the spine hadn’t developed properly.”
The couple were referred to specialists at the Royal Victoria Infirmary in Newcastle who confi rmed their baby had severe spina bifi da, was paralysed from the chest down and had a hole in his back so large it was probably impossible to close up through surgery.
“The news just got worse and worse,” says Shelly. “We were told a cyst was destroying his brain bit by bit and that his head was fi lling up with fl uid.”
But the couple refused a termination because they wanted to give their baby a chance.
Shelly was scanned every two weeks throughout her pregnancy and when they found out they were having a boy they named him Noah.
“Doctors said he had so many problems he probably wouldn’t ever take a breath but even if we got fi ve minutes with him then we knew it would be worth it. But they put a non- resuscitation order on him as they said it wouldn’t be fair to keep him alive.”
Devastated they returned home to Abbeytown, Cumbria, to break the news to their family including Shelly’s daughters from a previous relationship: Steph, 22, and 18- year- old Ally.
KNOWING their son’s odds of survival were extremely low they started to plan his funeral.
“We went into autopilot,” says Shelly. “Our whole world had fallen apart but we wanted to have everything organised so that when the time came we could be with our baby and just grieve without having to worry about all the arrangements.
“When I was 17 weeks’ pregnant we went to the undertakers. As I sat there choosing coffi ns I could feel the baby had hiccups and was jumping around. I felt so guilty. Here I was planning his funeral when he was still inside me and so full of life.
“We picked a tiny, white coffi n and some fl owers and went to see our priest and chose hymns and prayers for the service.”
Medical staff were worried about the huge build- up of fl uid inside Noah’s head and in March 2012 Shelly was rushed in for a C- section at 37 weeks.
Noah was born weighing 9lb 7oz and doctors were stunned when he began breathing on his own and carried out a fi ve- hour operation to stitch up his back. They also put a permanent shunt in his skull to drain off fl uid. We didn’t expect him to live so when they pulled him out and he let out this loud, life- affirming cry it was unbelievable,” says Shelly.
“Rob and I couldn’t stop crying. Before the birth we’d been told that he wouldn’t be going to the special care baby unit because they were adamant he wouldn’t take a breath and said it would be cruel to keep him alive on oxygen. They’d even reserved a special room for us so we could say our goodbyes to Noah. But he came out fi ghting and surprised us all. It felt wonderful having to ring the undertakers to let them know that we wouldn’t be needing their services. They were delighted for us.”
Noah was allowed home after 10 days but due to several life- threatening infections he had to return to hospital many times and there were more setbacks to come. A scan when he was six- weeks- old revealed he had two per cent of his brain left, which meant that he would be severely mentally and physically disabled.
“It was a huge blow but we always refused to give up hope,” says Shelly. By seven months Noah was using sign language to ask for milk, smiling and holding his toys.
At the age of two he was talking, being potty- trained and had learnt to use a fork and spoon and drink from a cup by himself.
And last month he celebrated his third birthday and has just learnt to stand for the fi rst time with the help of a body brace.
“He’s just amazing and has proved everyone wrong,” says Shelly. “People expect him to be a vegetable but he chats away and loves singing and dancing.
“He knows all of his colours, numbers and shapes and can count to 20. He takes selfi es and posts them on Instagram and Facebook and he even speaks a bit of Spanish. Every morning he wakes up and says, ‘ Good morning mummy, I love you gorgeous’.
“The doctors can’t explain it and there’s no one else like Noah that they can compare him to.
“They don’t know why or how he can do as much as he does despite having only two per cent of his brain.”
NOW Shelly devotes her time to raising awareness of spina bifi da and the fact that taking folic acid three months before trying to get pregnant can help reduce the condition.
“The midwife mentioned taking folic acid when I fi rst found out I was pregnant, which I did, but I didn’t realise the huge benefi t in taking it when you’re trying to conceive.”
Spina bifi da sets in at 14 days after conception – way before most women even know that they are pregnant. Taking folic acid reduces that risk by 72 per cent.
Shelly tries to spread the message on social media and Noah has thousands of followers on Twitter and Facebook.
“Noah is the true defi nition of a miracle and has defi ed the odds at every stage.
“The doctors aren’t able to tell us how long he will live so we don’t know what the future holds but we count every day as a blessing.
“Noah enjoys life and he’s so funny. He charms everyone he meets and just never stops smiling. He’s just our gorgeous little boy and we love him so much. After everything we went through we still can’t quite believe that he’s here.”