Dan’s Story

Dan’s Story

Our brave fighter Ellis, was born 10th November 2009 at just 36 weeks weighing 4lb 5oz. His cardiac
condition, Tricuspid atresia, VSD and severe pulmonary stenosis, was diagnosed during a routine
20wk antenatal scan. Cardiologists at Birmingham Children’s hospital, monitored Ellis throughout
the pregnancy and prepared a plan following his birth. Ellis was transferred to BCH PICU at a few
hours old. Unfortunately, the medication to stabilise Ellis until he was big enough for his first open
heart surgery, failed, and at just over 24 hours old Ellis was rushed to theatre. It felt like a terrifying
scene from a hospital drama, seeing our little baby boy full of wires, machines wildly beeping with
numerous medics surrounding him, running through PICU towards the lift. We managed to give Ellis
a quick kiss before the lift doors closed shut! After an agonising 8 hours, we were reunited with our
very poorly little boy, where the next 24 hours were critical.

Ellis was transferred to the high dependency unit after one week, however after just a couple of
days, because he was so tiny, his body was unable to cope with his new “plumbing” and he spent a
further four weeks in PICU. A milestone moment was giving Ellis his first bath in the hospital. He
screamed the entire time, albeit worrying and upsetting to hear him cry, it was amazing to hear him
protesting! After a rollercoaster of a stay, Ellis was finally discharged home on 23rd December just in
time for his first Christmas. It was an emotional moment when he met Santa, not a dry eye in the
Ellis had his second open heart surgery at 4 months old, which wasn’t plain sailing either! He
contracted bronchiolitis, extending his time on the ventilator and his stay overall.

Ellis has had two more open heart surgeries, along with, plication of his diaphragm and countless
cardiac catheters. His condition is incurable with all treatments only palliative, requiring further
surgical interventions in the future.

Ellis is now a handsome 13-year-old, with Autism and an amazing sense of humour! He is now year 8
of high school, which was a time we were unsure we would ever see! Ellis enjoys Lego, Formula E
and Formula One, and if he isn’t watching it, he is playing it on his Xbox.

Thanks to BCH Ellis has been given this precious gift of life! Dr Stumper (now retired) is our hero for
everything he did for Ellis, along with all the fantastic surgeons and nurses. Charities like Little Hearts Matter and Young at Hearts is a wonderful support for families such as ours, providing a safe community for our heart warrior.