Grangemouth family thanks NHS for little Lily's lifesaving care

After what would have been a very tough year even without the Covid-19 pandemic, Nikki Aitken and Gary Graham are looking forward to spending their first Christmas as a family of five.

Little Lily Mary Graham was born on May 5, 2020 at Glasgow’s Southern General Hospital at 12.47pm.

She has two different birth weights – 11lb and 6lb 9oz – the first includes the large tumour she was born with, which was more than one kilo in size.

And after all that their little girl has been through since she was born – including two lifesaving operations – the family consider themselves very lucky.

Nikki, Gary, Ellie (7) and three-year-old Owen are excited for Lily’s first Christmas, especially after the year they have had.

After suffering from severe hyperemesis gravidarum for the first 20 weeks of her pregnancy, and being hospitalised because of it at 19 weeks, Nikki felt there was something not right.

She explained: “It got to the point I wasn’t feeling right and wasn’t taking anything in, so I felt that the baby mustn’t have been getting anything either.

"I had a scan at 19 weeks and they could see a black area on Lily’s abdomen.

"I was told it could be one of three things – a cyst on her ovaries, something wrong with her stomach, or something wrong with her bladder.

“We were referred to the foetal medicine unit at the Southern General. I was told at 30 weeks I’d need to deliver in Glasgow, but when I got to 34 weeks I started to get to contractions.

"We went to Larbert, where they got me stable and then I was blue lighted through to Glasgow.

"I had to stay in there for three weeks before having Lily, as I wasn’t allowed home. I couldn’t see the other kids.

"You always say you want some time away from the kids, even just five or ten minutes, but I hated being away from them. It was really difficult. I couldn’t see my partner either.

"I knew Lily wouldn’t be able to be delivered naturally. She was born by c-section and was taken straight away to be ventilated as she couldn't breathe.

“It wasn’t until the day after she was born we found out it was a tumour. She had an MRI scan so they could determine exactly what was there.

“It was over 1kg in weight and had grown from her tail bone, round and over her abdomen to her rib cage.

"She was born on the Tuesday and on the Friday she had the operation to remove the tumour.

“We weren’t allowed in because of Covid – it was a very long day. My partner went to sign the consent form, but he couldn’t go back through to Glasgow until she had come round and then only one of us could go. She was in the operating theatre for nine and a half hours."

Although the tumour has been removed and there’s currently no sign of it returning, Lily requires regular follow up appointments and it has left her with other health problems.

Nikki continued: “The size of the tumour means she has problems with her kidneys, and her lungs hadn’t developed properly. Her bladder doesn’t function and she has to be catheterised daily.

“Because of where the tumour was they had to operate right on the tail bone, and there’s uncertainty over the nerve and muscle damage it could have done. So we don’t know if she’s going to be able to reach the milestones that most children would, like crawling and walking.”

It’s been a difficult situation for the whole family, made harder by Covid-19. Lily spent six weeks in the neonatal ICU before being allowed home with only one parent allowed in to see her.

When she returned home in June, it was only a matter of days before she had to be re-admitted to hospital.

Nikki said: "We nearly lost her again. She had a complete bowel obstruction and she struggled to breathe.”

Lily was rushed into hospital and underwent the second life saving operation in her first eight weeks of life.

Regular trips to the hospital in Glasgow have become the norm as medical staff keep an eye on her health. But the family are thrilled to have her home.

"Ellie and Owen absolutely adore her, they love making her laugh.

“She has days where she struggles quite a bit pain wise, but she still manages to find a way to smile and laugh for us.

"With everything that she has been through, we’re so lucky she’s here with us. It’s not been easy for her at all but she still smiles for us.

"She’s used to going and getting her bloods taken now and she just gets on with it. It’s like she’s resilient to it all and she takes it all in her stride.”

Nikki said: “We have our good days and our bad days. There’s a lot of uncertainties for her still.

“She’s going to need to get regular bloods taken and scans going forward.

"This is her for the rest of her life. She will never have use of her bladder and she may have other health problems in future.”

She added: “We would just like to say a massive thank you to all the midwives, nurses, doctors and surgeons at Glasgow Southern General and Glasgow Children's Hospital who saved Lily's life twice in the first eight weeks of life and who continue to give her the best care and support due to her complex needs.

"Also, a massive thank you to our family for helping us so much through these difficult times.”