told by mum Vicky

Cara was born with Pulmonary Atresia in Sept 2018 and at her 20 week scan we were told there was something wrong with her heart because the pulmonary valve hadn’t formed properly. We were told Cara was eligible for fetal balloon valvuloplasty at 28 weeks pregnant.

This involved a needle being inserted through my tummy and into Cara’s heart to try and open the valve and allow blood through, by inflating a balloon through the needle! While this initially worked, unfortunately the right ventricle collapsed and so we knew she would face at least three heart surgeries in the first few years of her life.

Cara was induced at 39 weeks and she had her first surgery, a BT Shunt at just 17 days old. This went well but due to an infection in the wound post op we ended up in hospital for the first few months of her life which was really difficult. She struggled to feed after this and had her second heart surgery at 5 months old, the Glenn. This was less traumatic and she was able to eat and gain weight much better after this.

Although she was a very happy baby, she struggled with breathlessness and fatigue until her third surgery, the Fontan at age 4. The operation went smoothly and Cara is less breathless and able to run and enjoy playing with her friends. She started school last year and so far has managed full days at school which is amazing!

Cara’s initial heart surgery (the Fontan) was cancelled in Feb and then rescheduled to April 2023, it all went very smoothly, and she is doing really well now and about to start school. She is definitely more pink now!

Cara loved having her molly dolly with her in the run up to her surgery, it was great to open up conversation with her about having a scar and talking about how to look after it too. It has been so good for her to have a dolly to play with that looks like her and has encouraged lots of lovely role play!

We also used CHF story books Rosie goes red, Violet goes blue‘ aswell as some other books to help prepare Cara and her siblings for her stay in hospital, these were great.

Cara is enjoying the new energy she has and has now started school.

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.