told by mum

Our little girl Freya was born on 27 Feb 2021 with pulmonary atresia/Ventricular Septal Defect (VSD). She is our absolute hero.

When Freya was first born things looked quite bleak, she had no central pulmonary artery and the branch arteries to her lungs were so small. We were told there might not be anything they could do for her and that even for her very complex condition, she was at the extreme end. But the surgeons agreed to insert a central shunt when she was 9 days old to try and save her life and hopefully, get the branch arteries to grow. She went on to have a cath lab to increase them further, and then her 2nd open heart surgery to insert a Sano shunt and patch open her stubborn branch arteries. No-one knew if she would ever get to a stage where her VSD could be closed – something we knew was vital for getting her oxygen levels more normal and to improve her quality of life.

Over a year later, just before Christmas 2022, Freya’s oxygen saturations were dropping and the only option was to have her 3rd open heart surgery. This time, they hoped to close her VSD and replace her conduit with a larger one that might give her a few years of surgery free life, but we were told they wouldn’t know if that would be safe to do until she was in surgery. There are no words to describe the feeling when her surgeon said he had managed to close the VSD. Her recovery was remarkable – in 10 days we were home with a pink toddler who was more content, more confident and had oxygen levels of 95%!

We know more surgery will be needed, and her branch arteries are still not behaving and growing like they should so more catheter procedures look likely in the not too distant future. But compared to that newborn baby she has surprised us all – now a sassy, strong and independent nearly 3 year old, all traits that we believe have got her through her first few challenging years!

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.