Esme was born in 2020 and was soon diagnosed with failure to thrive. It wasn’t until she was 11 months old that her heart condition, atrioventricular septal defect (AVSD) was diagnosed. This is her story, told by her mum, Hannah:
My daughter, Esme, was born in July 2020 and my entire pregnancy had been through lockdown. When she was born, she had issues with feeding and was seen weekly by community nurses to monitor her weight gain. They diagnosed her with failure to thrive.
When Esme was 11 months old we took her to the doctors because she’d had a cough for about a week. This led to a bronchiolitis diagnosis and a hospital stay, as her oxygen levels were low.
We’d been there for about a week and her levels hadn’t improved. They x-rayed and found she had an enlarged heart, and through further checks a heart murmur was found.
After this Esme was taken for an echocardiogram and we discovered she’d been born with the heart defect, AVSD. She needed open heart surgery immediately.
Esme wasn’t able to have surgery for a further two weeks because doctors had to wait for the infection to clear. She eventually had surgery ten days before her first birthday. At this time we were unsure if the surgeon would be able to repair her valve or if she would need a replacement. Luckily, they were able to repair her valve and delay any further surgery until she was much older.
After surgery it was unclear if she would need a pacemaker. Doctors removed the wires of her temporary one on the day of her first birthday and, from that moment on, she was completely back to her normal self.
We spent six-and-a-half weeks in total in hospital, and while I’m eternally grateful that we found out about her congenital heart defect when we did, I believe finding out during pregnancy would have been beneficial to everyone.
It’s scary to think that we came close to losing her. She could have been thriving for much longer had her condition been detected earlier.
Esme is now three years old and to outsiders she doesn’t show any signs of congenital heart disease (CHD). She’s happy, thriving and very proud of her “wonder line”.
Find out more about AVSD here.
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