Felicity’s heart defects were unfortunately not found until she became dangerously unwell and went into heart failure. Mum, Amy, tells us their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
I gave birth in February 2020 to Felicity. She was quite unwell for a few weeks after birth, and nobody could work out what the problem was. She wasn’t feeding well, had bad reflux, was very sick, mottled in colour, breathless, didn’t sleep at night (but loads in the day), and was puffy looking – especially around her eyes and face. I found this all extremely frustrating as I felt like I was failing as a mum.
We were in and out of our local hospital every other day until, eventually, she got admitted for a week. Upon admission, they detected a large murmur and told me that Felicity was in heart failure. The doctors treated her with diuretics and other medications and put her on a strict feeding plan.
The doctors were in contact with a specialist hospital, who gave me an appointment at the cardiology outpatient department. On the day of this appointment, I left for the specialist hospital at 6 am, picking my partner up on the way. Once there, Felicity had an echo, and we were told the devastating news that she was incredibly unwell. She was diagnosed with type 2 truncus arteriosus, an ASD, and a VSD.
Felicity and I lived at the specialist hospital for six weeks. She was in intensive care for 12 days before she was stable enough to have the operation she needed. The doctors put her on a type of ventilation called CPAP.
Seeing Felicity so unwell and recovering from a traumatic birth, was just the worst feeling in the world; I felt so helpless and constantly worried that she wouldn’t survive, especially with the coronavirus making an appearance.
It was a very lonely time living in the Ronald McDonald house, but equally, the staff and other families staying there made it feel like home. Leaving Felicity in intensive care every night to go back to my accommodation was extremely difficult, but I just had to trust that the staff were doing their absolute best.
Felicity eventually had her surgery in March 2020, and after eight long hours, her heart was fixed. They left her intubated in intensive care with her chest open to allow for swelling. Her chest was closed two days later.
Once Felicity had been woken up it was like I’d been given a different baby. Felicity was NG tube-fed at home for around a week before she learned how to use a bottle again.
Felicity now has regular scans and tests and will need further surgery in the future as a valve she had put in won’t grow with her. Her next operation will likely be when she is around nine or ten years old.
Felicity is now four and is about to start school in September. She doesn’t let her heart stop her from doing anything and she can’t sit still; if there’s music on she’s always singing and dancing, and she even won the egg and spoon race at her sports day two weeks ago. She never fails to amaze me, and during her hospital appointments, she’s the bravest little girl; I’m so proud of her.
In 2021, Amy did a skydive to raise money for tiny hearts, inspired by her amazing heart hero, little Felicity! We are so grateful to Amy for her fantastic support!
Are you interested in taking on a skydive for tiny hearts? Click here to find out more!
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