Heart warrior Callie-Mae recently featured on BBC documentary ‘Saving Lives In Leeds’.
In the final episode of the series, we followed Callie’s story as her family prepared for her to have open heart surgery, performed by surgeon Osama Jaber at the Leeds Congenital Heart Unit.
Now age 1 and nearly walking, Callie is thriving!
We caught up with Callie’s mum Amanda who told us a bit more about their experience at Leeds, and how the family were supported by Children’s Heart Surgery Fund during that time…
At my 20-week scan in Hull, we went in expecting to just see our beautiful girlie on the screen – we already knew she was a girl from a private scan two weeks earlier.
When I laid on the bed the lady was going over my tummy with the probe and smiling away telling us the measurements etc. Then it came to her heart…and she stopped smiling and went quiet.
Although from Hull, Callie-Mae had open heart surgery at Leeds General Infirmary because of its specialist heart unit.
Finally, she spoke and said she was having trouble getting the measurements of baby’s heart and she was going to go get someone to help. Another lady came in and had a go at the ‘measurements’. Ryan, Callie’s dad, and I knew something was wrong by their faces.
When they stopped the scan, they said to us “we think there may be an issue with the baby’s heart”. They said that we would have to come back in a few days to have another scan with a senior sonographer.
The day came around and we returned to the hospital to be re-scanned. It was then we were told our baby had congenital heart disease – Transportation of the great arteries (TGA) and multiple VSD’s. They said that our care would now be transferred to Leeds General Infirmary as Leeds had a specialist heart unit.
Once at Leeds we were told in detail what would happen at the birth, how Callie’s operation would go and the rough timing of everything.
Sarah from Children’s Heart Surgery Fund came to see us after Callie was born, to check how we were doing. Sarah is the Family Support Supervisor at CHSF.
While I stayed in Leeds with Callie, my husband Ryan was doing trips to and from Hull to see us as much as he possibly could. Once Sarah found out we lived so far away, we were given food vouchers and money into my bank to help with all the costs. This was amazing as it really was costly staying in hospital with Callie, and Ryan travelling from home and back in the car.
“As a family we were shocked and scared by Callie-Mae’s diagnosis, but in time we have learnt that she’s still going to grow and have an amazing life.”
Callie was given her Katie Bear teddy, medal, and certificate after she had surgery, which we will treasure forever. These are given to every child who has open heart surgery at Leeds.
We were also given accommodation at the hospital, first in Brotherton Wing and then at Eckersley House, which again was a weight lifted from our shoulders.
The accommodation meant I wouldn’t have to go home when our little girl was fighting in hospital. Plus, at the time I was breastfeeding so it wouldn’t have been possible for me to be in Hull and Callie to be in Leeds, where she needed to be for treatment.
Every child who has open heart surgery at Leeds receives a Katie Bear teddy from CHSF, as a reminder of their bravery and strength.
Since we left hospital, Callie has thrived and grown so much. I’m so proud of her. She only had to go back to Leeds once, in December last year, to have a band removed from her heart which was placed during her first surgery.
Now age one, Callie has been attending Children Centre play groups and has been making lots of baby friends, who she loves to see.
As a family we were shocked and scared by Callie-Mae’s diagnosis, but in time we have learnt that she’s still going to grow and have an amazing life with her siblings (Kaylub, Kyle, Kody and Charlotte) and extended family.
We will be forever grateful for the help we received in Leeds.
1. Callie-Mae at play group, 2. Callie-Mae with her four siblings, 3. Callie-Mae age one
Watch the full episode of Saving Lives in Leeds, featuring Callie-Mae and surgeon Osama Jaber here.
Callie-Mae is just one of the 500 babies and children who need open heart surgery at Leeds every year, and joins the 17,000+ patients from across Yorkshire, The Humber, N.E Lincolnshire and North Derbyshire who are treated by the Leeds Congenital Heart Unit.
Children’s Heart Surgery Fund have been supporting our heart unit for 35 years and we want to ensure we are there for our region’s heart warriors and their families for life.
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