Amber-Marie found out her daughter, Harlow, had a congenital heart defect, aortic stenosis, when she was 37 weeks pregnant. This is their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
When I was pregnant with Harlow, we thought we had a perfect pregnancy.
When I went for a scan at 20-weeks, the sonographer thought they saw something wrong with her heart. I went back for another check and was told everything was good.
Fast forward to nearly 37 weeks pregnant and I went for a growth scan. I was told that she had more fluid on one side of her brain than the other. I mentioned about having a previous heart scan, so they did a quick little check and said “Yes, we can see something.”
I came back a week later to have all the checks, and was told that Harlow had aortic stenosis. This means the valve on the left side of her heart doesn’t let the blood pump through her body properly. It should open and close, but hers doesn’t properly.
A week later it had got worse, and I was told I needed to be induced. Harlow would have to go to NICU (neo-native intensive care unit) when she arrived before she could have surgery.
Harlow was born on the 7th January. At five days old, she had her first open heart surgery. This opened her valve and would give her the best chance of life.
Harlow was on a life support (ECMO) machine for seven days after her surgery and spent nearly four weeks in PICU (pediatric intensive care unit).
Just before she reached two months old, Harlow moved hospital. When her dad and I were learning to do nasogastric tube (NG tube) training, she caught para influenza and ended up back on a ventilator and in PICU.
After treatment for this, Harlow had keyhole surgery to open the valve once again. With this keyhole surgery, Harlow was able to come home about ten days later. She had spent over nine weeks in hospital between the two different surgeries. We had been told it was meant to be a six month stay in hospital, but Harlow proved everyone wrong.
Harlow is now a thriving one year old and is doing amazingly. She is due to go back into hospital soon and have the Ross/Konno procedure. This will replace the valve on the left side of her heart with her right side heart valve, and put a donor valve into the ride side. Hopefully this will be her last surgery for several years, but she will always have check-ups to see how everything is coping.
Find out more about congenital heart disease (CHD) here.
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