told by Dad

 

Ethan was born 24/07/2007 and because I (Dad) was bourn with clicky hip we was expecting an appointment for a hip checkup which did come back as all clear when it took place, in the background what we didn’t know was the midwife that came to the house weekly found something abnormal with his heart beat and ordered a referral but not to our knowledge, so we had a date for the hip examination which to us just a routine check nothing of urgency so I went to work and mum took Ethan to the appointment for his hip.

Once mum arrived at the appointment to her astonishment, they said the appointment was on the pediatrics department not the hip department despite the letter stated the latter, so the lady directed mum to the correct department and at this appointment Ethan was referred further to the children’s heart clinic at Leeds general infirmary as they suspect he had TOF but needed the MRI’s etc then mum had to call me to tell me of this and I wasn’t able to stay at work as I was very emotional, he was only 8 weeks old at this time and it came back he has congenital heart defect called Tetralogy of Fallot broken down is 4 defects with Ethan’s heart and they explained to us he will need open heart surgery at 1 year old to allow him a better survival rate post op.

Ill not go to much into me and mum but I think you may understand our shock/distress and upset.

At Ethans age of 6 months young I received a call from Leeds Hospital while I was sat with Ethan playing while mum was shopping and they explained to me to bring him in straight away for pre op observation ready for his surgery the following morning I couldn’t talk actually at this moment bust out crying and managed to get the words “we will be there” out and I put the phone down and started to pack some things for the 2 week stay in hospital and then it was my turn to tell mum and we then left and to be honest I have no idea how I got us to Leeds in the car but I did.

So Ethan had all his pre op observation and was cleared for surgery first thing that following morning it was a 8 hour operation that seemed a lifetime to us then after the op we was allowed to see him in the ICU ward, Kirsty broke down instantly so I felt I had to keep my cool and be the big man but inside I wasn’t in a good way at all.

At this time I am emotional as thinking of what Ethan went through and the other children some of which passed away in our presence just heart wrenching to see not just for us but the nursing staff/surgeons and without saying the parents of these babies I will never forget the parents pain.

At the time of the 1st baby passing away Ethan started to come around after his Surgery and hi lashed out ripping the canular out of his groin and squirted blood all up my t-shirt and face Kirsty wet daft bless her but she wasn’t aware that a baby had passed at that time but I was so I stopped the blood flow with pressure and it worked after 5 mins a nurse was available to help and put the canular back in I knew they was busy and I also knew Ethan had enough medication to last the 5/10 mins it to me was not as urgent as the other things.

Ethan then went on to make a full recovery without any further incidents but needed regular checkups as his valve replacement isn’t a permanent fix he was a very joyful little cherub and still is to todays date.

Ethan was a very active child very powerful and strong and started to get very sports oriented at around 4/5 years young taking interest in all sports at school but he was very impulsive and always changed his mind on what he wanted to do costing a fortune on kits etc but only the best for Ethan 🙂 got me wrapped round his fingers.

We had a set back in 2015 Ethan had to have urgent open heart surgery as his pulmonary valve had failed that was repaired at 6 months old again very traumatic and also was the day before his 8th birthday 23/07/2015 so spent his 8th birthday recovering, with Ethan’s age he was very aware after his op of the severity of what he had just gone through and I couldn’t be the strong big man this time and broke down in bits on the hospital floor which Ill never forgive myself for I should have been strong for the more aware Ethan he has night terrors due to the PTSD and he is also diagnosed with Autism Spectrum Disorder, Ethan’s stay in hospital was only 4 days this time around and made a full recovery.

Ethan was granted a wish holiday to Give kids the world village January 2018 we went as a family of 6 our first holiday abroad as a family and we made everlasting memories and have returned on other family holidays to Orlando since.

Fast forward a couple of years to high school being the Trinity Academy Thorne, again Ethan excelled at sports and played football and became a member of the school running team he was always asked every year to be part of the teams due to his fitness levels, he also became a very keen cyclist and became part of the British cycling association but lost interested as he started to sway towards Boxing but thankfully this is the sport he has chosen to stick with but if anything all the other sports have kept his fitness levels up to be of an excellent standard of fitness that boxing requires and I’ve always know his fitness has been of a needs must due to his condition so I’ve always supported his decisions even though they have been mind numbing and expensive interests 🙂.

Ethan’s heart check up 4 months ago was gleaming and his defect has actually got slightly better I heard it in his heart beat and mentioned it to Mr hays and he commented that it has got slightly better and he stated what ever he is doing to keep doing it i.e. boxing and eating healthy.

Ethan has his amateur boxing licence and is keen for his first fight and is training 6 days a week 5 in the boxing gym sparring and fitness and 1 day solo on fitness at this time his first fight should be the 18th November 2023 but may change he is an inspiration to many including me, going through everything he has and to get into a boxing ring fully licenced and to turn into a lovely young man with a bright future ahead I’m a proud Dad and wish him well in his life his inspiration made it a breeze to get through my cancer diagnosis and operation last year, and to be fair who am I to complain after all Ethan has been through.

 

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.