Grace Brown, from Barnstaple, was expecting her third child when a scan revealed that her 34-week old foetus was exceptionally small.
Grace suspected that something was wrong, and her concerns grew when she gave birth to 5.5lbs Honey on 30 October 2014.
“Honey’s siblings were both large 9lb babies. I was immediately very concerned, but of course I was relieved when they said that Honey was healthy.”
But Grace’s concerns continued to grow in the coming weeks.
It was very hard to wake her up for a bottle and she didn’t put on any weight
“Honey was extremely sleepy, it was very hard to wake her up for a bottle and she didn’t put on any weight. She had permanently cold hands and feet and she screamed every time she was bathed or changed. She hated being cold.
"I took her to see my GP when she was six weeks old, on 22 December 2014.”
Within minutes of listening to Grace’s worries, the GP was equally concerned. When he listened to tiny Honey’s heart, it was beating very loudly and at an alarming 180-200bpm.
Grace and Honey were referred to Bristol Children’s Hospital’s specialist cardiology unit on Christmas Eve. ”I had two other children at home, who were so excited about Christmas and couldn’t understand that their mummy and new baby sister may not be coming home. The trip to the hospital was heart wrenching.
She had a defect in the wall dividing the left and right ventricles of the heart
“I was told that Honey was in early heart failure. She had a defect in the wall dividing the left and right ventricles of the heart; a persistent opening between two major blood vessels leading from the heart and a small hole in the heart. When the doctors told me she would need open heart surgery I was crushed.
“I remember earlier asking if Honey and I could spend a night with our family. I thought she was dying and I wanted her to at least experience the magic of Christmas once.”
Doctors let Grace and Honey go home as she was too small for the surgery. Honey was to be fed with a feeding tube in the hope that she would start to put on weight.
Honey was constantly ill and her health worsened throughout January when she was readmitted in numerous occasions to hospital. “It was awfully painful to watch her decline. Eventually the cardiologists couldn’t wait any longer.
“It was nine hours before the surgeon finally came out and told us that Honey had suffered a bleed and had been put on bypass machine earlier than intended, which had taken over the function of her heart and lungs. Although the doctors hoped her heart’s natural rhythm would return again within a couple of days, it didn’t happen.”
The doctors who cared for Honey told Grace that her daughter’s heart would never beat by itself again
A few days after the surgery, the doctors who cared for Honey told Grace that her daughter’s heart would never beat by itself again. “It was upsetting but there was still hope in that a pacemaker could be inserted into her tiny body. We had no option at that stage so we gave our consent’”
The surgery was a success and Honey recovered quickly although it took several weeks before she was able to drink from a bottle again. “Now she is crawling and nearly walking,” says Grace. “Although she is still tiny and has some health issues she is as demanding, noisy and wonderful to us as any other little girl.”
This year, Grace only wants one thing for Christmas: better early diagnosis of serious heart conditions in babies: “My biggest regret is that Honey wasn’t diagnosed earlier. I am convinced that her condition wouldn’t have got so critical had her heart problem been diagnosed during the ultrasound scans.
I began researching her condition and came across a wonderful charity called Tiny Tickers
“After Honey was diagnosed I began researching her condition and came across a wonderful charity called Tiny Tickers. They train sonographers in how to better spot heart defects in babies.”
Grace wants to encourage all parents-to-be to be more confident in asking sonographers to do an extra check on the heart. “Early diagnosis gives babies a far better chance of surviving and parents have the right to ask for an extra look at the heart.”
Jon Arnold, Tiny Tickers' Chief Executive, says: "Honey's story is just one example of why it’s so vital that heart defects in babies are detected early. Treating babies before they fall into the early stages of heart failure improves their survival chances, and can mean they have a better long-term quality of life.
"That's why Tiny Tickers works with health professionals and sonographers to make sure that babies with heart problems are diagnosed as early as possible - preferably during pregnancy.
"Around 1,000 babies are sent home from hospital every year in the UK with an undetected heart problem. Our mission is to get these babies spotted earlier so they get the treatment they need as early as possible.”