Little Elle Russell is like any other eight-month old baby.
She loves Mickey Mouse, watching her big brother Leo play and she smiles. A lot.
So you would never guess that she spent the first four months of her life in hospital.
And that at just 13 weeks old she underwent 16 hours of open heart surgery to save her life.
Four months after she left hospital, mum Kara Langlands is still elated to have her daughter home in Carnoustie with her and her six-year-old son Leo.
Kara said: “Elle is the most resilient, strong and happy baby girl – our heart warrior.”
She told us of the most terrifying night of her life as the hours ticked down to Elle’s operation, and of the day she thought might never come – taking her home.
Elle Amara Russell was born on May 12, 2023, weighing 6lb 3 oz, and was immediately hooked up to tubes and machines to keep her alive.
It was at Kara’s 20-week prenatal scan that the heartache began.
Kara, 26, had a normal pregnancy to that point but her sonographer told her she was unhappy with her baby’s heart formation and needed a second opinion.
Three days later at the Royal Hospital for Children in Glasgow pulmonary atresia was diagnosed, which means the heart has not developed properly and blood cannot travel to the lungs to pick up oxygen.
Doctors were also worried the baby may have a chromosomal defect called DiGeorge syndrome, which can cause a range of health and learning difficulties and reduce life expectancy.
To Kara’s relief both DiGeorge and Down’s syndrome were ruled out by amniocentesis.
Another twist
But she was told that her baby would need medical intervention as soon as she was born, including surgery within the first two weeks.
To ensure she would deliver in Glasgow, Kara was to be induced a weekly early but at her final pre-natal appointment at RHC six weeks before her due date there was another twist.
Kara said: “I was being scanned and noticed straight away that her heart rate seemed quite high. I had a home Doppler and I’d listened at all the appointments so I knew what her heart beat sounded like and this was extremely fast.”
“I was put again in this family room where we always get the bad news.
“They came in and said ‘you won’t be going home today, you will be having a Caesarean section tomorrow.
“I was petrified because it’s a major operation but at the same I time I wanted her out so they could make sure she was ok and start working on her.”
As soon as Elle was born she was placed in an incubator and tubes were inserted, including a cannula to administer prostaglandin. This kept open her ductus arteriosus, a part of an unborn baby’s blood flow system which normally closes shortly after birth.
Kara said: “Before they took her up to NICU [neonatal intensive care unit] they brought her over to me. I didn’t get to hold her but I got to give her a kiss and say hello.”
Elle’s dad Lennon Russell, 24, stayed with her but it was 10pm before Kara was able to join them.
When Leo met his little sister
She said: “When I finally got to see her, it was a lot to see.
“My heart shattered seeing all the monitor leads, lines and cannulas.”
It was the next day before Kara was able to cuddle her daughter for the first time.
And the day after that Leo came to meet his little sister with gran Amanda Langlands, who he stayed with while Kara was in hospital.
Kara said: “The minute she heard his voice her eyes opened and she was looking at him.”
Throughout Elle’s time in hospital Kara and Lennon, who are not a couple, stayed at the neighbouring Ronald McDonald House family accommodation, which Kara described as a godsend.
Elle defied doctors, who said she would be too tired to feed, by breastfeeding at five days old.
Kara said: “When she latched on you couldn’t get the smile off my face. There were so many things we were told she wouldn’t do and she did.”
When Elle was 19 days old, a stent procedure was conducted which it was hoped would allow her to go home until her heart was fully repaired at a later date.
After the operation she did well. She was breathing by herself and was taken out of her incubator.
That was probably my worst night ever. I stayed awake the whole night just looking at her.”
But just days later Kara and Lennon’s hopes were dashed when alarms sounded on Elle’s monitors. The stent had failed.
Kara said: “We were told we wouldn’t be able to go home until she had had her open heart surgery.”
A date was set for the procedure – a major operation for anyone let alone a tiny baby and not without its risks.
Kara said: “I felt sick but I was so happy at the same time. I knew she needed it and I wanted her home, I wanted to be home with Leo.”
The night before Elle’s surgery, Kara and Lennon stayed at her bedside.
Kara said: “I think that was probably my worst night ever. I stayed awake the whole night just looking at her.”
The following morning Kara carried Elle down to the pre-op room.
“I put her down on the bed then everything happened so quickly,” she said.
“They put a mask on her and by they time they took the oxygen off and put medication into her they needed her through.
“But I just didn’t want to let her go.”
They were told the surgery would take eight hours and advised the family to go away and try to do something to take their minds off it.
While Lennon’s dad was with him, Kara went shopping in Glasgow with her mum and her best friend Megan but the hours dragged by.
She said: “We phoned for an update about 4pm and we were told it was all going well.
“Then we phoned again at 6pm and we were told things were progressing slowly.”
That change in message struck fear in to Kara’s heart.
She said: “We phoned every hour thereafter but weren’t told anything more.
A second hole in her heart
“At 2am we were told she would be getting taken to recovery soon.”
When they arrived at the hospital, they were assured Elle was well and the repair was a success but there had been a major hitch during the operation.
When the surgery was almost complete, another hole was found at the back of her heart and the whole repair had to be undone and started from scratch.
Elle had been on bypass and her heart stopped for 699 minutes.
When Kara was eventually allowed to see her at 4am, the sight of her baby hooked up to machines and swollen post-surgery was overwhelming.
She said: “Nothing can prepare you for that. I burst into tears and sobbed and sobbed.
“It didn’t look like her. She still looked so beautiful but she was huge.”
Only three days later Kara faced a difficult decision. Elle was still weak after the operation but it was Leo’s first day at school.
Mum guilt
“Do I miss his first day to stay with her or do I stay and years down the line regret missing it?”
Kara decided to be with Leo, leaving Lennon by Elle’s beside.
“That was awful leaving her, the mum guilt was real.”
By the time she returned though, Elle had improved dramatically and was much more alert.
Seven days after her surgery she was off her ventilator.
Kara said: “For the first time ever we were seeing her oxygen levels at 100%. I couldn’t believe it. I must have 10 pictures of that monitor!
As she cuddled her daughter she said: “I fell in love with her all over again, it was like meeting her for the first time.
“In that moment I finally believed she was ok.”
The next few weeks were spent building Elle up, preparing her to go home.
For the first time, she was able to go outside.
Kara said: “I borrowed a pram from the ward. Three and a half months old and she had her first taste of fresh air.”
Then on September 11, exactly four months from the day Kara was kept in to deliver her early, Elle was allowed home.
Kara said: “It was the day we thought would never happen.
“I didn’t tell Leo we were coming home and we surprised him at school.
“He walked out of his class, saw my mum and she pointed to us. He came running, his face, he was so happy!
“The first night home with both my babies under the same roof is something I’ll never forget.
Of their medical team at RHS, Kara said: “I really cannot thank them enough.”
Elle is now thriving, her weight up to 17lbs.
She recently had her first post-op check up and her doctor was delighted with her progress.
Kara said: “People say to me, if you didn’t know Elle’s story you would never guess.
“She’s just an ordinary baby. They say kids with heart conditions can be quite petite and skinny but that’s not her.”
Elle will need to have open heart surgery again, probably when she reaches school age and then in her 20s, as she will outgrow the conduit fitted.
But otherwise, her condition is likely to have little impact on her quality of life.
And Kara says her little heart warrior is full of beans.
“She’s the boss. She makes me belly laugh sometimes, she’s the most hilarious little girl ever.
“And she’s so happy and content.
“I genuinely can’t imagine life without her now.”
Is your family a little bit different or do you have a story to tell? Maybe it’s who you are, what you do or how you got there that sets you apart. If you have a tale to tell we’d love to hear it.
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