'When he was born I was praying for him to make a sound': Irish mum who tragically lost her newborn son one hour after he was born
Alison and Dave Fleming faced the cruelest dilemma when a pregnancy scan diagnosed Edwards syndrome in their unborn child
Published 28/10/2016 | 02:30
Around this time every year, Wicklow couple Alison and Dave Fleming put together a fundraising event in memory of their beloved baby son. The charities that have benefited to date have helped them to deal with the devastating loss of Matthew, who was born in Mount Carmel on November 2, 2010, and lived for just 86 minutes.
On what would have been Matthew's second birthday, Alison and Dave decided to run a fundraiser to buy cuddle cots - a Moses-type basket with a cooling system that enable babies to stay in their mother's room after they pass. They raised enough to buy three cots for Féileacáin, Ireland's stillbirth and neonatal death association, one of which has a little plaque with Matthew's name engraved on it.
"I thought that was a wonderful idea, because having to let Matthew go to the mortuary in a separate building killed me," says Alison, who has four other sons, James (12), Jonathan (10), Daniel (8) and David (5).
When Alison was pregnant with Matthew, a scan at 17 weeks detected two choroid plexus cysts in his brain. After a more in-depth scan two weeks later, Alison's consultant mentioned the possibility of Edwards syndrome, also known as Trisomy 18. It's caused by an error in cell division in chromosome 18, one of the 23 pairs of chromosomes in humans, and causes life-threatening complications.
Many babies pass away in the womb or shortly after birth and are often born small and with heart defects. Other features include a small head and jaw and severe intellectual disability. Ten per cent may survive to their first birthday, and a small number (usually girls) will live beyond that. However, they will have significant developmental delays that do not allow them to live independently without full-time care.
Alison and Dave's options were to continue with the pregnancy, knowing that their baby was probably 'incompatible with life', or seek advice about travelling abroad for a termination.
"Termination wouldn't have been an option for me," she says. "I felt that if God wanted to take my baby, I wasn't going to help him or give Matthew to him. I don't condemn other women who make that decision at all, because I think everyone should have the choice.
"It's a devastating situation, as you can feel the baby moving, you're still his mother and you don't love him any less. If anything, you become even more protective of him because he needs help."
Being pregnant, when the outcome will be sad, is emotionally difficult, and Alison showed huge strength in ensuring that everything was in place when Matthew was born. She didn't want him taken away while she was in recovery after the Caesarean, and it was important to her that he was immediately baptised.
Matthew David Fleming was delivered by Caesarean at 38 weeks, weighing four-and-a-half pounds. The plan agreed between Alison and Dave and the hospital was that if he showed signs of life when he was born, he would be given 'comfort care' and oxygen to help him breathe. There would be no aggressive intervention to prolong his life.
"There's a fine line between wanting to keep your baby alive and the cost to him," Alison points out. "He was so tiny and delicate, and I didn't want him to be kept alive longer just because I didn't want to let him go. When he was born, I was praying for him to make a sound, and he did. He was breathing, but not very well, and he was absolutely gorgeous with loads of red hair and tiny little features. He had one eye open, and when I said, 'Hello Matthew,' his two eyes opened."
Alison was brought back to her room with Matthew, where his brothers, grandparents and uncles met him. A ‘Lay Me Down to Sleep’ photographer came to take pictures, which the family now treasure.
With a tiny little oxygen mask over his nose to help him breathe, Matthew lived for 86 minutes, and passed away peacefully in his heartbroken mum and dad's arms.
A couple of months later, Alison discovered she was pregnant again. Baby David Alexander Matthew was born in October 2011, 11 months after Matthew passed, and he was a gorgeous, healthy child.
"Nobody in the world could replace Matthew because he had his own place, but I reckon David was handpicked to be sent because while all our kids are amazing, he's the happiest child I have ever met," Alison smiles. "The hospital staff were so happy for me, and it was great that my time of having babies there ended on a high, not on the sadness that accompanied Matthew's passing.
"Our boys ask questions about him constantly, which is a challenge, but it's lovely that they remember him and want to understand what happened to him. We drive past where he's buried every day, and they blow him a kiss and give him a wave."
The Flemings were invited to a family bereavement weekend at Barretstown a few months after Matthew died. By the time Alison left three days later, she felt it was one of the best things she had ever done.
"I didn't want my children to grow up in a miserable household, because it's not their fault that Matthew died," says Alison. "I also didn't want to be the type of friend who sucked the life out of a room when his name was mentioned, even though I wanted it recognised that he existed.
"Barretstown helped us to realise it's okay to be sad and also okay to be happy. It doesn't mean you hurt any less, as what happened is still always a part of you."
Alison and Dave decided to bear any costs of their fundraising events not covered by their generous sponsors themselves so that all of the money goes to the charity. This year, it's a 5km run or family fun walk in Wicklow in aid of Barretstown, as it helped them to get back on their feet as a family unit and made them smile again.
Alison, strong and compassionate, says: "I'm just another bereaved mother who is doing her best. When I dropped the boys to their first day of school last year, I saw the junior infants and knew Matthew should have been there with them. Moments like that really hurt, but it's important to find a way to deal with it so I do something positive with that energy.
"I will never get over losing Matthew, but fundraising gives me a focus and a time that I can publicly acknowledge that Matthew existed, that I miss him and that he is not forgotten."
The 5km Run and Family Fun Walk for Barretstown takes place at noon Sunday November 6. Register at Murrough car park in Wicklow town at 11.30am (€10 for adults and a donation for children). To donate online, visit everydayhero.com/ie and search for Matthew Fleming