IMAGINE being told your unborn baby boy has half a working heart. 

That is what we were told at our routine 20-week antenatal scan. It was confirmed by the cardiologists from Birmingham Children’s hospital and we were given our options.

At this heartbreaking time we decided to give our little boy a chance and continued with the pregnancy. 

Ellis was born with the congenital heart defect (CHD) known as Tricuspid Atresia (Hypoplastic heart).

A normal heart has four working chambers but with Tricuspid atresia the right side of the heart is either missing or severely underdeveloped and unable to function. 

There is no cure, but instead a series of surgeries, usually performed within a child’s first few years, Ellis’s first being within the first 24 hours, to reroute the plumbing of the heart in order to survive, and likely need a transplant someday.

Twenty years ago, most of these babies died days or weeks after birth. Despite having a very different circulation, one which is a medical marvel, today many babies with Hypoplastic heart survive and grow to lead “normal” lives. 

During Ellis’s first two years, the oxygen saturation in his blood was within  the 70s rather than 100 per cent as for a normal heart.

This is barely enough oxygen to sustain organ function, let alone enough to grow and thrive.

Through surgical interventions his saturations are generally in the 80s, but this is still somewhat debilitating, hence being very hard for Ellis to walk great distances or have stamina to play like others.

Ellis appears to be a healthy four-year-old, apart from his small stature, and unless you see the scars on his chest and numerous other places he blends right in with his peers (unless they are physically active).

Sometimes this is  a real challenge and for only a short duration.  Ellis may look like any other child and people often mistake his treatments “making him better.” His body is drastically different than ours and with every beat of his heart, he is beating the odds.

Children with severe heart problems are more vulnerable to illness and can be affected more severely and take longer to recover than other children and even a simple cold can become life threatening.

As a result, my family have become ‘germ-a-phobes’ and we try to keep Ellis away from illness as much as is possible! 

I pray for Ellis to have a long and happy future and when I hear him say things like “when I grow up” it often breaks my heart. I live one day at a time and I’m thankful for every day, every moment, every second. 

To date, Ellis has had four open heart surgeries and 14 other invasive procedures.

He will never be “done” with surgeries, his heart will never be “fixed”, and his life will always be full of medications, tests, procedures, and surgeries. 

My life as a heart mum will be never be the same as it's living with worry, anxiety and the fear that my brave boy will join the angels who have already gained their wings, but always hope that he will never give up his fight.

love my strong fighter with everything I have and celebrate every moment and milestone, because no matter how small, it's something sometimes I never thought I would see. 

Ellis is a happy positive, determined heart hero and his half a heart doesn't mean half a life, he is our brave little fighter, our miracle, and a true inspiration. 

ABOUT CHDs

Congenital Heart Defects are the primary birth defect in UK affecting eight in 1,000 live births—that’s over 5,000 babies per year.

Improvements in paediatric heart surgery and clinical care have led to more children with heart conditions surviving into adulthood. The number of adults with heart conditions is now increasing at an estimated rate of  per year.

CHD Awareness Week is an annual awareness effort to help educate the public about Congenital Heart Defects. Participants include individuals, local support groups, national and local organisations and congenital cardiology centres throughout the world.