I knew something was wrong at my 20-week scan when the sonographer went quiet – then our world fell apart
AT the 20-week scan for their second child, Catherine Brighton was told it was bad news.
Their baby had congenital heart disease and would need life-saving surgery after he was born.
Delivered on October 7, 2021, surgeons told Catherine and husband Jamie that baby Rafe would likely need that surgery at around six months old.
But Rafe’s condition deteriorated quickly, and after several trips to hospital with dangerously low blood-oxygen levels, on December 20 he was rushed into theatre at Great Ormond Street Hospital – and then spent Christmas day in recovery on the ward.
Catherine, 41, from Tring in Hertfordshire, also mum to Harry, three, said: “When the sonographer went strangely quiet at the 20-week scan last July, I knew something was wrong.
“She put down the doppler, looked me right in the eyes and explained something was seriously wrong with our baby’s heart.
“I just kept asking her to repeat it, unable to take it in, then asking if he was going to die. It was like our world had fallen to pieces.”
Referred from their local Lister Hospital to UCLH for more scans later that week, Catherine broke down in front of the doctors.
She said: “I seriously thought they were going to say this was it, our baby wasn’t going to make it, but the lead surgeon assured me that while his heart condition was complex and critical, it could be repaired.
“He had something called tetralogy of fallot, or TOF – four serious defects which affect the structure of the heart, causing oxygen-poor blood to flow out of the heart.
“I now know that while it sounds horrific – including a hole in the heart – a TOF diagnosis means you’re actually one of the lucky ones.
“After relatively risk-free surgery our son could lead a normal life, with few complications, they told us.
It was like our world had fallen to pieces
“But at the time, the combined overriding emotions of love and anxiety were simply crushing.
“We were lucky this had been picked up so early – some people aren’t diagnosed until after the birth – and we were in the best possible hands.”
After regular scans during the remaining weeks of the pregnancy, Rafe was born by elective C-section at 39 weeks.
Catherine said: “While he spent one night in intensive care, we were overjoyed he was stable, and a week later were sent home, where we had amazing support from a community nurse to check his heart, breathing and oxygen levels.
“We were told it was likely he’d need corrective surgery at around six months, but just six weeks in, the nurse noticed his oxygen levels had dropped to 77 – with 85 being safe.
“Rushed to Stoke Mandeville Hospital, he was kept in for a week with a common cold, then sent home.
“But a week later his oxygen levels dropped way lower and we were told to rush to A&E.”
There Rafe suffered his first ‘tet spell’ where his oxygen levels dropped worryingly low, down to just 63 – surrounded by what felt like a dozen medics and nurses, his parents were told Rafe would need surgery as soon as possible, and on December 9 he was rushed to Great Ormond Street.
Catherine said: “Suffering more tet spells and regularly ventilated, his heart simply wasn’t strong enough anymore.
“Finally, on December 20 we bathed Rafe, put on his tiny surgical gown and he was whisked into theatre.
‘WORST STILL TO COME’
“Jamie and I paced the streets of London, everyone else doing their Christmas shopping while we prayed that surgery was successful.
“Any notions of spending our first Christmas at home with our baby now seemed like a pipedream.
“Six hours later we got the call we’d prayed for – the surgery had gone well, surgery he was supposed to have had at six months, not ten weeks old.
“When we first saw him after that, his skin now pink and rosy compared to the ashen, blue colour it had been before, I realised just how poorly he’d been before.
“His face and eyelids were all swollen, with countless tubes coming out of his tiny body, but we felt like we were out of the woods.”
But the worst was still to come. Taken off morphine, Rafe was crying almost constantly with pain, and without an NG tube, he was vomiting up any milk he was given.
Catherine said: “He – and in turn, I – wasn’t getting any sleep, and due to Covid restrictions, I was on my own while Jamie looked after Harry at home.
“Christmas Eve, Christmas Day and Boxing Day were sheer hell – I Facetimed Harry opening his presents, trying to hold back the tears and put on a brave face, for his sake.
“Jamie was the only visitor allowed onto the ward, but he stayed at home for Harry – on Christmas Day he made a surprise visit to the ward to see Rafe and give me a massive hug.
“One thing that really lifted my spirits was a bag of little presents donated by strangers wanting to make the stay in hospital for parents like me bearable – a beautiful hand-knitted blanket, which is still Rafe’s comfort blanket that he takes everywhere with him; and a heart-melting, hand-written note which simply said: ‘The most powerful word we have is hope’.
“Reading that when I was shattered and still overwhelmed with anxiety, alone on Christmas Day, it meant the world to me.
“With amazing support from the nurses, slowly Rafe started feeding and sleeping, and on New Year’s Eve we were discharged to go home.
“Needless to say, I didn’t stay up to welcome in 2022, but two days later Jamie cooked me a belated Christmas dinner.
“For several months I suffered crippling anxiety around our boys’ health, but with regular hospital checks I realised how amazing those doctors and nurses at GOSH were, how we owed them everything.
“Rafe will need more surgery in the future, but right now, to look at him, you wouldn’t know what he’s been through.
“The scar on his chest is barely visible, and when I hear him babble and giggle, I just feel so blessed.
“I also now know that only around half of all TOF cases are picked up in utero – Tiny Tickers trains sonographers to spot the signs, as well as funding oxygen meters for new-born babies, which are critical.
“This Christmas will be the most magical ever – we’ll make sure to double the presents, double the food, double the fun.
“Harry’s beyond excited, and I’ll raise a roast to the GOSH medics who made this possible.”
Tiny Tickers is a small national charity, dedicated to improving the early detection and care of babies with serious heart conditions.
Their Think HEART campaign helps new parents recognise the five key signs that their baby may have an undetected heart defect.
Find out more at tinytickers.org.