In the UK, a mother was 20 weeks pregnant when she was told that her second child’s heart wasn’t growing properly and was offered an abortion.
Amber did not give up and still continued her pregnancy. Today, she was grateful that she did not choose termination because her son’s heart disease miraculously vanished five days after he was born.
In 2019, Amber was choking back the tears as she clutched her partner Scott’s hand After a 20-minute scan in hospital.
Amber, from Hemel Hempstead, Hertfordshire, said she knew something was awry, but nothing prepared her for what she was told.
Apparently, the left side of her baby’s heart was smaller than the right, which means he would need up to three open-heart surgeries when he was born.
She was also told that the children with this case don’t live past five years old, and was also offered an abortion.
“Scott and I were so excited when we found out I was expecting again and I couldn’t wait to give our little boy Sebastian, now three years old, a brother who we’d named Orton,” Amber recalled.
“But when I went for my 20-week scan in September, the sonographer said she couldn’t get a good view so I had to dance around and drink a fizzy drink to encourage movement.”
“She then tried again, but didn’t say anything for ages,” she said. “I felt sick when she said she couldn’t see the left side of Orton’s heart. Then she said we needed to be sent to London for an appointment at the Fetal Medicine Hospital.”
Amber then broke down and cried. Their next scan appointment wasn’t for another three days, which she says was the longest wait of her life.
When she went into the examination room, Amber laid down while the doctor spent 20 minutes doing an ultrasound scan on her stomach.
Amber knew something was wrong when the doctor asked the couple to take a seat afterward.
“My poor partner’s hands were aching from how tight I was holding them,” Amber said. “The doctor reached for a pen and paper, and that’s when I knew.”
“I couldn’t catch my breath, I could feel my eyes stinging from holding back the tears of the words I already knew she was going to say,” she said. “She showed us comparison pictures of our son’s heart next to a normal heart and said our son’s left side was the same length but not the same width as the right.”
“As the pregnancy was only 20 weeks, she couldn’t tell what the outcome would be,” Amber said. “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.”
Amber and Scott were also asked if they wanted to test whether their baby had any chromosomal abnormalities because babies with heart defects have a higher risk.
The couple was also offered a termination. In the UK, pregnancies can be terminated before 24-weeks if the unborn child has heart issues.
They were devastated that Orton’s heart wasn’t growing properly and was at risk of congenital heart disease.
“I cried the entire weekend, asking myself why me, why our baby, and questioning what I’d done wrong to deserve it,” Amber said. “I wanted the pain to end.”
“A fetal medicine nurse called and she was really supportive,” she said. “She understood that as a mother, I didn’t know how to feel and I didn’t know whether to terminate.”
“She told us to have a look at charities and Facebook groups; I was amazed to get support from couples all over the world,” Amber recalled. “They told us their stories and about living with a child with congenital heart disease after birth.”
“I’d walked into the CHD world scared and frightened,” she continued. “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.”
Weeks had passed, during Amber’s 23rd week of pregnancy, she declined an abortion and booked a scan for two weeks’ time.
The 25-week scan in October 2018 showed that the baby’s heart had grown ‘slightly’ and seemed to be working just fine.
However, the baby was diagnosed with coarctation of the aorta where the left main artery was too narrow to let enough blood flow to his other organs.
Amber and Scott were told this can still give Orton a heart failure – as well as other organ failures – and the only way to fix it is by open-heart surgery.
“The baby was still on the 10th line on the growth chart after another five weeks but he was steady,” Amber said. “There was no change at the 30-week scan either.”
“Again they asked if we wanted to test for chromosomal abnormalities as Orton’s bowel was bright but I declined as I didn’t want to risk putting him in any danger,” Amber continued. “We were booked in to view Brompton Hospital in London so we could get used to the surroundings before Orton arrived.”
“It should have been an exciting time but I was anxious,” she said. “We didn’t have much ready at home because I was scared I wasn’t going to be bringing him home. As sad as it sounds, I just didn’t want to jinx it.”
On 3 January 2020, when Amber was 36-weeks and three days pregnant, she said she was experiencing reduced movements and the doctors agreed it was safe to induce her at 37 weeks.
But during the scan, the sonographer said that the blood flow through Orton’s artery was normal. And the couple was shocked to hear that his heart had started to grow on the left side.
“As the doctor scanned me just after 36 weeks, she said she didn’t feel that the baby had the defect anymore,” Amber 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.”
Amber went into the hospital to be induced, and two days later, on January 10, she gave birth to a 6lb 8oz Orton who was “breathing perfectly”.
“I couldn’t believe it! He was breathing fine and seemed to stay a perfect skin color,” Amber said. “I felt every emotion as he was placed on my chest before he went to the NICU.”
“But it was short-lived as he started to struggle a little with his breathing and doctors gave him antibiotics for a suspected infection,” she said. “Our little boy got better and his results came back that there was no infection. A doctor in the NICU said everything seemed to be working fine. We were ecstatic.”
The next day after giving birth, the doctor told Amber and Scott that while there was no narrowing in Orton’s arteries, his heart was still small on the left side.
Four later, the baby was transferred to a transitional care ward and Amber and Orton were looked after by neonatal nurses.
On the fifth day, Orton was scanned again and the left side of his heart had “randomly expanded” to the size of the right heart and worked “perfectly”.
On the seventh day, Amber and her family went home.
“I couldn’t believe it when doctors said the left side of his heart had randomly expanded,” Amber said. “They said it was miraculously the same size as the right side and worked perfectly!”
“He was struggling to breastfeed due to having a serious tongue tie, but two days after the hospital cut it, we were able to go home,” she said. “I was so excited to finally enjoy being a new family of four.”
After four weeks, Amber sought a second opinion and had an appointment at Brompton Hospital. Thankfully, the scans confirmed that Orton’s heart was working properly – and there was no defect at all.
“It has been hard with Orton’s heart and going into a pandemic two months after he was born but I will always be grateful to the NHS for their support,” Amber said. “Congenital heart disease and Orton’s pregnancy has opened my eyes up to the world.”
“I started to document my journey with Orton back in 2019 and life as a mum-of-two; now I help families who are going through similar on my Instagram Amber and Boys.”
“I’m so grateful to have my son with me. He is now a happy, bubbly, cheeky one-year-old. Sebastian and Orton love playing together and I feel so lucky and grateful to have them both!”