At my 20 week scan I got told that there was something wrong with Florence’s…

At my 20 week scan I got told that there was something wrong with Florence’s heart. I got referred to the fetal medicine specialist over at Burnley hospital which I had to wait 5 days to go and see, the waiting was horrible and being in the unknown it was such a worrying time. When I went into the scan room they confirmed what the sonographers had found on the scan but told me in more detail there findings. I sat in the room with the specialist, midwife, myself and my sister. The specialist confirmed that Florence had a heart condition called ‘tetralogy of fallot’- this is a rare, congenital heart defect present at birth that changes how blood flows through the heart and deprives the body of enough oxygen. Due to Florence having this heart condition they didn’t know if she had other abnormalities such as Down syndrome, di George syndrome etc and if she were to have had these syndromes aswell as the heart condition Florence woulda been incompatible to life so they had to discuss the options of a termination, the only way to find out was to have the testing which I was offered. Two days later I then went to have a procedure called an amniocentesis, a medical procedure where a small sample of amniotic fluid is taken from the womb to check the health of the baby and there was a small percentage that I coulda missed carried. After waiting for the results the testing for the 3 main syndromes came back negative, we then had to wait more days for the rest of the testing results which also came back negative. We then got referred to see the cardiologist specialist at Manchester where the consultant there then confirmed what the specialist at Burnley had said. We then got told Florence would need open heart surgery between 6-9 months to close the hole in her heart.
Plans were put into place where I opt for a c section just so it was less stressful for her. When Florence was born she went straight to nicu where she was put onto oxygen. Hours passed and florence started to have apnea spells where she stopped breathing so they have to incubate her with a breathing tube to assist with her breathing. After spending 24 hours in nicu in Burnley we got transferred by ambulance to alder hey where we spent 9 days there living in the Ronald McDonald house and where Florence spent her time in nicu. At just a week old Florence had key hole procedure where a balloon was inserted to widen the lung value to help the blood and oxygen flow through better after having this Florence is thriving. We will attend alder hey every 4-6 weeks for Florence’s check up appointments and will await her surgery date but for now she’s at home with her loving family, thriving and growing. Life robbed us of time and it hasn’t been easy nor is it still but she is so resilient and strong and we are so proud of her everyday 🥺 our little heart warrior 🩷
I wanted to write our story to spread awareness and for any other families going through this your not alone ☁️

We attended alder hey on 14/9/2026 where Florence had a ECG, echo, was weighed and measured and we had a meeting with the consultants they where very happy with Florence echo, the fact she’s feeding really well and is growing. They are looking for her operation to be February March next year as long as all scans show positive things and that the heart is still doing it’s job and next time we go he’ll speak with the surgeons and get the ball rolling with the surgery to get everything into place. They will see us again in another 4 weeks time. Florence is able to continue her life at home thriving until her open heart surgery 🩷