Image credit: Carlo Navarra via Unsplash
A mum from Hertfordshire has shared how her unborn child was diagnosed with a heart defect during her 20-week scan. Doctors had advised her and her partner to abort, however, they chose life for their baby, who is now happy and healthy after his heart defect “miraculously” vanished when he was just 5 days old.
Amber Casey told the Irish Sun that she and her partner Scott were delighted to discover they were pregnant with their second child, a boy whom they named Orton. However, during her 20-week scan, the sonographer could not see the left side of baby Orton’s heart, and so referred Casey to a Fetal Medicine Hospital in London. There they were told that the left side of baby Orton’s heart was smaller than the right side. This, is turn, also made him at great risk of congenital heart disease.
“As the pregnancy was only 20 weeks, she couldn’t tell what the outcome would be,” Casey explained. “She said the left side of Orton’s heart might not grow which would mean at least three open heart surgeries to make the right side take on the work of what the left should have been doing.”
“She told us some children don't make it past five-years-old and many are in hospital for most of their childhoods due to surgery and recovery,” she added.
They were offered to test baby Orton for any chromosomal abnormalities and also offered an abortion. Casey explains how the couple were devastated at the diagnosis and felt unsure of how to feel and what to do, but after a call with a “supportive” fetal medicine nurse, Casey found some hope.
“She told us to have a look at charities and Facebook groups; I was amazed to get support from couples all over the world. They told us their stories and about life with a child with congenital heart disease after birth,” she said.
"I’d walked into the CHD world scared and frightened. I’d lost hope but these people gave me hope that I could fight this for my son, alongside him and with support from the NHS.”
Casey did not go ahead with the abortion and proceeded with another scan two weeks later, which discovered that the left side of baby Orton’s heart had grown slightly. However, he was further diagnosed with coarctation of the aorta where the left main artery was too narrow to let enough blood flow to his other organs. This could increase the chance of heart failure and doctors told Casey that baby Orton would most likely need open heart surgery.
At 36 weeks, Casey noticed that baby Orton’s movements had reduced and so doctors agreed it was safe to induce labour at 37 weeks. A scan at around that time also confirmed that baby Orton’s blood flow was normal.
“As the doctor scanned me just after 36 weeks, she said she didn’t feel that the baby had the defect anymore,” Casey said. “I thought I was hearing things when she calmly explained that the blood flow through Orton’s artery was normal and she didn’t see any narrowing."
Baby Orton was born on 10th January 2020 and was “breathing perfectly.”
“I couldn’t believe it! He was breathing fine and seemed to stay a perfect skin colour. I felt every emotion as he was placed on my chest before he went to the NICU,” said Casey.
A scan on baby Orton when he was just 5 days old confirmed that the left side of his heart had grown to a normal size and was working perfectly. The couple were able to take him home when he was a week old.
Four weeks later, baby Orton had another scan which confirmed that no heart defect was present. The following November, another scan again confirmed that his heart continued to grow and was “working perfectly.”
“Our hospital and neonatal cardiac doctor couldn't explain to us why this happened and no one had ever seen this before - it was a real miracle,” Casey said.