Our baby girl had SIX heart ops in SEVEN months but now she’s finally home
TENDER: Barry hugs his girl
PROUD parents Christine and Barry Main can at last breathe a little more easily as they cuddle their treasured baby girl.
Lockdown has been tough for everyone, but for these brave new parents it was an emotional rollercoaster as they wondered if their tot would live or die.
They are finally at home with Annabelle, who spent her first seven months in a hospital 400 miles away and had SIX operations in just seven months.
Two were open-heart surgeries to save the tiny baby. She was born in January, weighing just 4lb, with hypoplastic left heart syndrome (HLHS).
The rare condition means only the right side of her heart is working properly.
Fighter
Only one parent at a time was allowed to be with Annabelle. Christine, 31, said: “It was the most difficult time ever. Every surgery brought its own fears, and each time she pulled through it was a huge relief, but there were also times when we thought we were losing her.”
The couple recorded
Annabelle’s progress on a
Facebook group, which had 750 followers. She was discharged on July 24.
Christine, of Law, South Lanarkshire, said: “Taking her home for the first time was so emotional, it was what we’d been holding on to for the whole of lockdown.
“It was amazing to have support from strangers, saying she was a fighter, praying for her – it gave us comfort to know people were thinking about her. The circumstances meant we should have felt truly isolated and alone, but
w we actually felt all this love.” The c couple, who are both supermarket managers, were delighted to discover in May last year Christine was pregnant.
But a 20-week scan revealed p problems. Medics at Queen E Elizabeth University Hospital in Glasgow revealed their un unborn daughter had HLHS, w which affects about one in every 5,000 children. For sufferers, the left side of the heart does not grow, which prevents it from pumping blood around the body effectively.
Christine and Barry, 34, were told their baby would need at least three openheart surgeries and had just a 57 per cent chance of living to school age.
Christine said: “We were given three options – to have a termination, which was recommended, to give birth and put her on palliative care, or go for the surgeries once she was born with no guarantee she would survive.
“It was heartbreaking, but there was never any question that we’d do anything but give her a fighting chance.”
Due to t he condition, Christine was admitted to Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust, in South London.
The couple stayed at charity accommodation Ronald Mcdonald House, a “home from home” for parents of hospitalised kids. She said: “It was a real lifeline. Before that we were considering selling up and moving to London to get her the care she needed.”
A scan on January 3 found Annabelle had stopped growing in the womb. She was born by an emergency Caesarean two days later.
Terrified
Christine said: “Thankfully there was time to bring Annabelle over and lie her next to me for seconds before she was whisked to a ventilator.
“Those seconds felt like a lifetime to me, they were so special. She was tiny.”
She had her first operation, on her pulmonary arteries, at just four days old.
In two further surgeries, at two and four weeks, Annabelle had stents inserted in her heart.
By April, at three months and weighing nearly 7lb, she was big enough for open-heart surgery to restructure the organ.
Barry said: “That was the most high risk, we were told there was a 25 per cent chance it wouldn’t work.” Six weeks later Annabelle
We’d do anything to give our girl a fighting chance
She’s been through so much but she’s a bubbly wee baby
had a fifth op in which parts of her heart were stretched open using a balloon inserted via a catheter.
But the tot suffered complications including a collapsed lung, and spent a month in intensive care. Medics even considering putting her on life support.
Christine said: “We were terrified we’d lose her. She’d been through so much and we’d hoped we were out of the woods, so it was a huge setback. We weren’t allowed phones in intensive care so none of our family could video call her.
“At that time we were only allowed by her side one at a time. Barry and
I had to tag in and out.
“The rest of the time I tried t o exercise, c l eaned our room or baked for accommodation staff. There were 60 families there at the start of l ockdown, which dwindled down to us being in the last handful as time went on and others were discharged from hospital. Sharing the updates on our Facebook group gave us some comfort, knowing people were rooting for our girl.”
Annabelle turned a corner and had her second open-heart surgery in July at six months old. It diverted blood to the lungs for oxygen without passing through the heart, easing strain on the organ. Later that month, Annabelle was briefly referred back at Royal Hospital for Children in Glasgow, and she was finally allowed to go home for the first time on July 27.
Christine recalled: “We didn’t tell our parents to surprise them with a
BESOTTED: Couple all smiles with Annabelle visit. Barry’s mum was so shocked she said words I can’t repeat – they were all just so overwhelmed and emotional.
“We shared the video of their reactions to the Facebook group to reveal the news to everyone.”
Dr Aaron Bell, a consultant involved in Annabelle’s care, said: “It’s been a joy to see Annabelle bounce back so well from her most recent surgery and see her finally be able to go home with her family.”
Excited
The family will be heartened by the example of a five-year-old boy with HLHS who defied medical odds and walked into school.
Two years ago doctors had warned that Harry Lee would never walk again. In September 2018 he had open-heart surgery which failed.
He suffered pneumonia, a stroke and sepsis, and spent three months fighting for his life.
Mum Claire, 40, of Stourbridge, West Mids, said: “Dropping Harry off for the first time, I was incredibly proud. He was so excited to go to big school and he immediately looked like he belonged there.
“It made my heart burst. Harry deserves that same chance to learn and socialise as other children.” The
Main family are supporting the Cardiology Kids #1in100 campaign, named after the approximate ratio of children born with a congenital heart disease [CHD].
Annabelle is among 77 children treated for CHD at the Evelina whose photographs appears in a music video for the campaign, to raise money and awareness for its cardiology department.
The tot will need at least one further surgery before she is five.
Looking ahead to the possibility of a second lockdown as restrictions tighten again, Christine is happy she will be at home.
She said: “I will never take the simple things for granted – like taking Annabelle for a walk and cuddling her whenever we want to.
“We really can’t thank the staff enough. Without the cardiology team, she wouldn’t be here.
“You wouldn’t know she’s been through so much in her short life so far. Annabelle is just such a happy, bubbly wee baby.”
Follow Annabelle-hlhs-legend on Facebook, and give to the Evelina campaign at uk.virginmoneygiving.com/ Iam1in100withchd.