Amara Y's quilt    (Quilt Closed)

Child Interests

She loves watching her iPad and playing with her toys. Her favourite colours are pink and purple. She loves hearts and flowers and loves anything girly.

Biography

My daughter was born in 2022. I was already aware she would be a heart patient as I found out during my pregnancy through scans. Prior to this I also had a son who had serious heart defects but sadly nothing could be done for him. He passed away peacefully after 5 months 1 week and one day in 2013.

When I was six months pregnant I had a scan done and I could tell something was wrong as the lady scanning me looked a bit shocked. I kept asking is everything okay? She then said 'I can’t find baby’s stomach.' I kept asking if the baby’s heart was okay as that’s all I was worrying about.

The sonographer called the doctors in and they started to scan and located her stomach on the right side of her body. It felt like it had been hours I was laying there and waiting for the verdict. I was then taken into a room and told my baby has left isomerism and they don't know if baby will be okay or not. I was given the option to terminate but I refused.

When my daughter was born she was taken straight away for scans. I was told she has Heterotaxy Syndrome so some organs in the body are in different places. She was born without a spleen and has lots of heart defects - she has two left sides of a heart and her anatomy is very complex. She was put on antibiotics for life twice a day. She had to go every two months for heart scans and had numerous of appointments as they had to carefully plan her surgery as it’s not straight forward as her whole anatomy internally is so unique.

In 2024 my daughter had major open heart surgery for her partial AVSD with common atrium , PDA and loop recorder implantation. She was in hospital for three weeks as she had some complications with her heart rhythm. She may need a pacemaker in the future as her natural pacemaker in her heart is in a different place. Her rate is very low whilst she’s sleeping so she has been implanted with a loop recorder to monitor this. My daughter is a miracle she is full of life and when you look at her you would never know she’s a heart patient or has complex heart anatomy. My daughter is a true heart hero. She has regular appointments to make sure her heart is good. I’m ever so grateful to the heart surgeons and the nurses and doctors who are supporting us.

Patterns

Squares received