It was just a passing remark from a kind stranger, a few gentle words of support as Kelly Louden sat in a café, struggling once again to feed her sick baby.
Yet even now, months later, Kelly can recall word for word what was said. And the memory of that stranger’s kindness can still bring her to tears.
“She just came up and said ‘Oh, NG tube, my baby had one of those. You are doing an amazing job’,” remembers Kelly. “It was so nice. This complete stranger giving support to me was the most amazing thing.
“I don’t know who she was, but I’d love her to see this and to know what a huge difference she made to me that day.”
Baby Brook had just come through the nightmare of lifesaving surgery to repair a hole in her heart. Finally, after weeks of worry, she seemed to be getting better.
On one hand, Kelly should have been feeling positive and upbeat. But Brook had been left so frail by her heart condition that she needed to be fed high-calorie liquids through a tube inserted via her nose and into her stomach.
It meant feeding time was clinical and messy – inserting the tube could take two or three attempts to get it right – turning what should have been a comforting and peaceful bonding into a miserable process of tears of discomfort from Brook and horrible stress for Kelly.
As she struggled on at home, juggling bottles of medicines, tubes and bags of feed, Kelly found herself questioning whether she was her baby’s mother or her nurse.
“I felt on my own, not normal,” Kelly remembers. “It felt like there was no one looking out for us. I just felt incredibly isolated. I forced myself to go out but that often meant people staring or avoiding us.
“That day in the café was incredible. I’ll never forget those kind words.”
The stranger’s kindness boosted Kelly at just the right time, giving her hope in her darkest moment. And now it’s inspired her to do the same for other parents struggling to cope with a child who needs to be fed through a tube.
She has created a website, www.fromngtubetoyummyfood.co.uk – which aims to guide other families through the ups and downs of caring for a young child such as Brook. Written from her own perspective as an ordinary struggling mum, the website explores the difficulties of simply trying to perform the procedure of inserting a tube, to grappling with feelings of distress, fatigue and worry.
Soon Kelly hopes to expand the website and even organise support group-style meetings for parents in a similar situation.
“I know that if I had seen a website offering advice to me when I was going through the worst of it with Brook, then I would definitely have found comfort in it,” says Kelly, 37, who lives with husband Scott, 44, in Lasswade.
“I want to let people know that they are not alone.”
Brook, now 16 months, had struggled to feed from birth, gasping during feeds and often becoming so exhausted that she would fall fast asleep still hungry.
Sometimes she would feed, vomit and then feed again, turning each feeding session into a messy and distressing process that could last for hours. Kelly and Scott raised the problem with doctors, but it wasn’t until Brook reached three months old and was clearly failing to thrive that the couple felt they had had enough.
“We felt she wasn’t right, she wasn’t feeding properly and not growing well. I was exhausted, she was too,” recalls Kelly.
“We took her to A&E and told them to keep her in. I think we had just given up and realised that we weren’t getting anywhere.
“She was becoming desperately ill and no matter what I did, how long I sat feeding her, it wasn’t working.
“It took two hours to feed her 60ml of milk through a bottle, which she would just vomit straight up again. Her body couldn’t take it.
“It was like telling someone to eat a four-course meal then go out running as fast as they can, they are going to struggle.
“Her body was fighting so hard to function that the moment we added food to the equation, she couldn’t cope. We had reached critical level.”
Brook had weighed 5lb 9oz at birth, but by three months old she had only put on 1lb 7oz and was becoming desperately frail.
It was then doctors discovered the hole in Brook’s heart was larger than originally thought.
She needed immediate surgery at Yorkhill children’s hospital in Glasgow to save her life.
“We were told if she didn’t have surgery, she would die,” recalls Scott, a photographer. “I carried her down to the theatre in my arms and held her hand while the anaesthetist put her to sleep.”
The couple then faced an agonising seven-hour wait for news. Later they learned that the procedure had been particularly difficult and that the hole couldn’t be fully repaired although it’s unlikely to pose further major difficulties.
Brook was in hospital for a month after the surgery in August last year.
“Eventually we were sent home with bags of medication, heart drugs, antibiotics, NG tubes and formula,” recalls Kelly.
“Our home resembled a hospital ward and I became her nurse, strictly measuring her feeds, constantly checking her nappy, getting medications sorted.
“I felt I was in crisis management mode the entire time, and so alone.
“Feeding your baby is supposed to be a nice, natural, calming and bonding experience,” she adds. “With an NG feed baby it’s upsetting for them when you are putting in the tube and it’s upsetting for the parent because you don’t want to be doing that to your child. Babies pull it out, other children who are curious can pull it out and people stare, wondering what it’s for.”
Kelly eventually managed to wean Brook off the NG tube and onto normal foods boosted by nutritional supplements in August.
But the thought of the kind stranger’s words when she was at her lowest ebb are an instant reminder of how low and desperately in need of support she was.
“She made me see that you can get through it. Now I look back and say, ‘OK, that was hell, but we have done it, we are through it and we can let it go. And hopefully we can let other people see they are not alone.”