Unbeknown to us Jordan arrived with complex congenital heart defects, Double Outlet Right Ventricle (DORV), sub-arterial VSD, pulmonary atresia and collaterals of the left lung.

https://www.tinytickers.org/support-info/different-types-congenital-heart-defects/double-outlet-right-ventricle/

He had his first open heart surgery at 7 days old (April 1998) where a central shunt was inserted to support and control blood flow until he was big enough for repair surgery. The latter took place when he was 15 months old (July 1999), again by open heart surgery. At some point in this 15 month period he also had, and recovered from, aortic valve endocarditis - he collapsed with MRSA septicaemia at 16 weeks which is the likely cause. In 2006 he underwent bilateral pulmonary artery stenting and further ballooning in 2012. 

Heart wise Jordan has been very stable until summer 2020 following the first Covid-19 lockdown when, during a round of golf, he went into Atrial Tachycardia. A 48 hour stay in Royal Stoke, he recovered quickly and was back out playing golf within two weeks although he is now medicated, something that he was free from cardiac wise since his repair in 1999. 

And heart wise he is currently waiting for a decision on valve replacement - we know it will have to happen, and sooner rather than later.

To add to Jordan's heart condition he collapsed at 4 weeks old with necrotising enterocolitis and had 80% of his small bowel removed. He also suffers with chronic lung disease and bronchiectasis of the left lung.

At around 12 weeks he was diagnosed with a genetic condition called Di George Syndrome (22q 11.2 Deletion) which primarily pre-disposes him to immunity issues, speech & language delay, global developmental delay and learning disabilities. Now that I have time I will be updating our blog (https://workrestplaycare.blogspot.com/) over the next few weeks and months to give a wider insight - it might even be quite cathartic after all this time!

Each year we choose a charity to raise money for and this year we are going back to where it all began as a 'tiny ticker'.

Jordan didn't walk until he was 3 years old. He still struggles from time to time with leg pains and utterly dislikes the thought of a stroll out but enjoys a regular round of golf on the Par-3 (one mile) and now he has a motorised trolley can manage 9-holes on the main course at his club. Anywhere else and any longer and a buggy is required.

So, as the golf courses are currently closed this challenge (and it will be no mean feat) of 23km in Heart Week (8 - 14 February) is one way of getting him out exercising and keeping his legs and circulatory system moving to ensure he is fit enough to hit the course when it reopens! 

Thank you to everyone for your support and donations :-) We will update the page with progress during Heart Week.

A baby is born with a serious heart condition every two hours in the UK and despite congenital heart disease being one of the biggest killers of infants, only around half of congenital heart defects are picked up during routine prenatal scanning. With your help Tiny Tickers can provide a safety net for the 1,000 babies each year that leave hospital with their heart defect undetected, increasing detection rates, improving a baby’s chances of survival and long-term quality of life.