Tiny Tickers in the Daily Mirror
The hearts who fought and won!
Picture the prime candidate for heart disease you’d probably think of a middle-aged bloke with a beer belly – but some of those most at risk are at the opposite end of the scale – Tiny Newborn babies. Congenital heart disease is one of the biggest killers of babies in the UK, the cause of one in every 13 infant deaths.
Every two hours in the UK a baby is born with a serious heart defect, but only 50 percent of heart issues are picked up before the birth, which can reduce the chance of survival.
The charity Tiny Tickers helps improve early detection of any heart issues at the 20-week scan, and teaches new and expectant parents about their baby’s heart – helping to prevent unnecessary deaths.
Jon Arnold, head of the charity and dad to Zoe, 10, who was born with a serious heart condition, says “Only about half of these life-threatening defects are spotted during pregnancy. Our Think 20 campaign tells mums-to-be all about how their baby’s heart grows and what their sonographer will be looking for.”
Alan Cameron, Professor of Foetal Medicine at Glasgow University says spotting defects early leads to better survival rates and quality of life. “Detection during pregnancy means the necessary preparations can be made,” he says. “The right medical experts can be on hand at birth; treatment can begin as early as possible; and parents-to-be can receive specialist support.”
And because roughly 1,000 babies per year leave hospital in the UK without their heart defect being spotted, Tiny Tickers is running a ‘Think Heart’ campaign.
Parents (and medical professionals) should use this simply anagram to spot warning signs in babies:
H = Heart rate
Is your baby’s heart rate too fast or too slowly – it should normally be 100-160 beats per minute?
E = Energy
Is your baby sleepy, quiet or floppy? Are they too tired to feed, or falling asleep during feeds?
A = Appearance
Is your baby a pale, waxy, dusky, blue, purple, mottled or grey colour?
R = Respiration
Is your baby breathing too fast or too slowly – it should normally be 40-60 breaths per minute?
T = Temperature – Is your baby persistently cold to touch – particularly their hands and feet?
Here four mums whose babies were born with congenital heart problems tell their stories and explain how important early detection is.
Louise George’s baby Jessica had surgery on her heart while in the womb after a 20-week scan detected a serious congenital heart defect called hypoplastic left heart syndrome. The 38 year old mum from Slough says: “Taking in the results of that 20-week scan was horrific – doctors told us the severity of our baby’s condition meant it was unlikely she’d be suitable for surgery, so it was game over. One consultant mentioned Boston Children’s Hospital carried out foetal surgery, but he doubted it would be suitable. That was our only hope, and thankfully surgeons at John Radcliffe hospital in Oxford agreed to carry out the never-tried-before procedure. So at 28 weeks Jessica was operated on – inside me – to enlarge the hole in her atrial septum, the wall between the top two chambers of the heart, and improve the blood flow to the left side of her heart. A needle was passed into my bump and then into the baby’s heart through which the surgery was conducted.
Miraculously that was successful and meant surgery after the birth might now work – but only might. Jessica was born on 6th September 2011 and had her first open heart surgery, the first part of the hybrid procedure, at eight hours old. She had the second hybrid procedure a week later and left hospital after four weeks. At fourteen weeks old her Norwood procedure was carried out, and her Glenn procedure at seven months. She’s basically had heart re-plumbed so the right side of her heart does all the work. Every operation, every challenge, she was a trooper and came out fighting
Jessica’s now a bubbly and happy five-year-old who’s doing very well, and it’s expected that her Fontan completion, the final piece in the surgery jigsaw, will take place this summer.
We’d planned to have Jessica at home, so without that 20-week scan it’s likely she wouldn’t be here today. Her future is, and will always be, uncertain but we thank God every day for her, live in the moment and enjoy all those precious times together.”
Ivy Scarisbrick had a serious heart defect picked up 16 days after returning home from hospital late last year. Ivy’s mum, Sam, 26, from Kendall in Cumbria, says:
“My pregnancy with Ivy was fine, with nothing picked up in the scans, so when she was born on 27th November weighing a healthy 7lbs 11oz, my partner Piers and I were just excited about taking her home.
But after 10 days at home she lost interest in feeding, and our GP diagnosed her with bronchiolitis – and by day 16 she hadn’t had a wet nappy for 24 hours so we took her straight to A&E. Her oxygen levels were rock-bottom, and thankfully one doctor decided to do further checks and it was discovered she had Transposition of the Great Arteries (TGA) along with holes in her heart.
We were taken straight away to Alder Hey for treatment, but were they couldn’t operate until she’d recovered from her viral infection. So it was a waiting game, during which time she suffered everything from low sodium, to water retention to infections. A CAT scan on 2nd January showed she also had a problem with her coronary artery, which meant her operation would be longer, harder and more risky.
Having been christened, on 5th January she underwent a six hour ‘switch’ operation and had the holes in heart fixed, which mercifully went well – we’d been told there was an 80 percent of success, so had prepared ourselves for the worst
Ivy was stable in intensive care but every inch of her body was covered in a wire or a drain, which was terrifying to see.
She made a strong recovery and on 12th January she was allowed home. Ivy’s now doing brilliantly, with a battle scar down her chest to remind us all how close we were to losing her and how grateful we are to those incredible medics. I now advise all my friends with new babies to use the Think HEART anagram to check their babies. There’s no history of heart disease in our families so it just wasn’t on our radar – you really can’t be too careful
Gemma Redfern-Murphy was told at the 20-week scan that her baby had a serious heart defect. The 30-year-old events manager from Anglesey says:
“Hearing your unborn baby has a major health issue is horrific, but looking back I’m so incredibly glad we found out then – Martha was born on 22nd August 2013, by which time we’d managed to get a second opinion on surgery options, which basically meant she had a very good chance of having a physically normal life. The first opinion we got didn’t give us hope at all. My husband Mark and I could also plan ahead, knowing we’d need to be away from home for long periods.
She was born at Great Ormond Street Hospital looking perfectly healthy and would’ve died in the next few days if we hadn’t known that inside she was far from perfect and needed immediate treatment. Her aorta was far too narrow to provide enough blood for her body and she also had a massive hole in her heart. Initially we’d been advised to terminate her, but we wouldn’t give up that easily, and the second opinion we got from a specialist consultant in London gave us hope.
It’s been a very rocky road involving four open heart surgeries and all manner of complications, ending this March when she had her pacemaker changed. Mark and I have been up and down to London almost endlessly, but we were prepared from the word go for what might lay ahead, which meant we could cope. With two other children to care for – Osian, 11, and Isabella, 5 – it wasn’t easy, but we did it.
But now if you looked at Martha you wouldn’t know what she’s been through. She’s a normal, naughty little girl about to start primary school this September and every day is a blessing.
Becky Hopkin’s baby was diagnosed with Transposition of the Great Arteries at the 20 week scan. The 30 year old mum from Bicester in Oxfordshire says:
“While we were devastated to be told our baby had TGA, I know now we’re one of the lucky ones as the ultrasound technicians had undergone training a week before my scan. It’s only picked up in around 1 out of every 3 cases, so the majority of babies with TGA are sent home undiagnosed, meaning their chances of survival are slim.
After being referred to the John Radcliffe hospital in Oxford, my pregnancy became a whirlwind of appointments and scans before Billy was born on 9th May. I had the briefest of cuddles before they took him off to stabilise him and start him on the lifesaving medicine he required.
At seven days old he was taken to theatre and a 4-5 hour surgery turned into 13 hours when his heart failed to start twice after he was taken off the bypass machine. We were told bluntly he wasn’t going to make it.
Two hours later we were told that he’d miraculously rallied and he was taken to PICU. We saw him for the first time in 14 hours surrounded by doctors and nurses, with an ECMO machine set up beside him ‘just in case’. It was the longest and scariest night of my life.
Billy’s chest was left open for seven days because of the horrendous swelling. Seeing him lying there so helpless and not being able to hold him or comfort him was terrible.
After nine very long days I got my first cuddle and you’ve never seen a happier woman! The next day he was taken back to the high dependency unit and we were on our long slow road to recovery.
Day by day our son got stronger. We were finally discharged from hospital when he was one month and one day old and haven’t looked back!
We were lucky we had a specialised team around us when Billy was born and that he received the treatment he required straight away. It also gave us time to prepare for his arrival, although nothing quite prepares you for the reality.
My message to other parents of heart babies is: keep strong – our heart warriors are fighters!