Watching your baby die from an incurable condition must be the worst thing for any parent. Catherine Scott spoke to one mother who has done just that.
Lucas Hannigan was a perfect baby. Unlike his big brother James he was an easy going baby who slept well. He passed all his newborn health checks and soon his parents Jenny and Steve were able to take their new baby home to Bingley.
But at his eight-week check the GP was puzzled – Lucas was thriving but he was very weak – he called it Hypotonia – and also noticed that his Moro (or startle reflex) was absent, although it had been their when he was born.
The GP wasn’t overly worried but he wanted them to see a paediatrician as he had never seen this before.
The family was referred to a neuromuscular specialist at the Leeds General Infirmary (LGI) .Eventually after a DNA test, Lucus was diagnosed with Spinal Muscular Atrophy (SMA), but by then the family had already pretty much diagnosed the condition themselves.
“The hospital wouldn’t tell us anything, so I put Lucas’s symptoms into the internet and almost immediately came across the Jennifer’s Trust website and couldn’t believe what I was reading
“This was when we first learnt about SMA. As I read through the parent stories, they described our baby Lucas over and over again. The ‘beautiful, bright smiles and expressive faces’, ‘short breast feeds’, ‘severe hypotonia,’ ‘exaggerated breathing.’ Lucas had it all. I remember it was a beautiful bright sunny day in October. All I could say was ‘My baby is going to die.’ I fell apart for a bit after that. I was functioning but I couldn’t eat or sleep or think. I knew what I had to do and what was going to happen. It just hurt so much to try and even begin to cope.”
All of a sudden Lucas started to deteriorate, he was really struggling to feed.
“There was nothing I could do. It took me a week to contact the Jennifer Trust. I was going out of my mind and it was then that I spoke to Claire – who later became my outreach worker. She was so calm and understanding, so empathetic. She explained what they could do to support us in the event that it was SMA and put my mind at rest about James and that it was impossible for him to have the condition too as he was now too old.”
On October 17, 2008, Jenny and Steve were officially told that Lucas had Spinal Muscular Atrophy type 1 and he probably only had two months to live.
SMA is the biggest genetic killer in children. One in 6,000 children develop the condition and there is a one in 40 chance of someone being a carrier. Both parents have to be carriers and then there is a one in four chance their baby will have SMA.
As soon as Lucas was diagnosed the NHS kicked in and the family was better supported. He had a feeding tube fitted, which improved his condition.
“I certainly started feeling better too,” says Jenny. “All of a sudden we were caring for our baby and actually doing something that made a difference.”
While dealing with their own grief at the inevitable, Jenny and Steve were also conscious about James. “He was amazing and never questioned why we had to spend so much time looking after Lucas and he was never jealous of the attention that Lucas got.”
Then Lucas fell ill. After a week in Airedale Hospital, suffering with a bad cold, they arranged for an ambulance to take the family to Martin House Children’s hospice.
“We were told Lucas had only days to live, but after two weeks we started to talk about going home.”
But Lucas suddenly took a turn for the worse and died in his mother’s arms
“We learnt to treasure every minute with Lucus and never take anything for granted. Most importantly we were given the time to say everything we wanted to say and to make sure we can look back on the four short months he was with us without any regrets.” The family have also been helped by the knowledge that two of his heart valves were donated to save the lives of two other children.
After Lucas died Jenny and Steve were faced with the difficult decision about trying for another baby, knowing that there was a one in four chance it might too have SMA
They were offered fertility treatment on the NHS
“We decided to try it naturally and while I did fall pregnant it was a very difficult time.”
At 12 weeks Jenny was able to have a test where cells were taken from her placenta which would tell them whether their unborn baby had SMA.
“The tests came back negative. It was the happiest day of my life. My little girl didn’t have SMA.”
Jasmine was born on August 3, the day before Lucas’s birthday.
“It took me a bit of time to bond with Jasmine,” says Jenny. “I think I was protecting myself because I had been so close to Lucas from the moment he was born. I have to believe that there was some reason why it happened, and it that is to help other people with babies with SMA then so be it.”
Family’s fundraising work
Lucas’s family are raising funds for the Jennifer Trust which helped them.
His uncle cycled through Vietnam and his dad Steve did a sponsored cycle ride last year. Now, with a group of friends his mum, Jenny, is helping to organise a Charity Wedding Dress Ball on February 18 at the Midland Hotel, Bradford. The proceeds from the ball will be split between the Trust and Manorlands Hospice.
For more information visit www.charitywedding dressball.co.uk or to contact Jenny visit www.lucaswashere.com.
To find out more about SMA visit www.jtsma.org.uk