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As some may be aware, on Tuesday 4th November 2014 Sanam and I became parents to an amazing lad named 'Idrees'. As you may also be aware, Idrees sadly passed away peacefully in our arms on 8th November 2014 at Alderhey Children's Hospital.
Idrees passed away due to a very rare heart condition, called 'Hypoplastic Left Heart Syndrome' (HLHS). HLHS is a very rare and serious pre-birth defect which occurs in 1 in 5000 babies. In summary, a child with HLHS is born with half a functioning heart.
Due to the severity of the condition, all HLHS babies require 3 open heart surgeries in their lifetime for any fighting chance. The first surgery, if the baby is a candidate for surgery, occurs in the first week of birth, the second takes place at 4 months after birth, and the final at 2-4 years after birth.
The surgeries are required to re-plumb the heart so that the body survives using just the right ventricle.
Survival rates currently are low for this condition with around 30% of babies making it past their teens.
Unfortunately, similarly to Idrees, not all babies are advised to have the surgeries. Each case is unique, however in our son’s case, we were advised that the surgery would prove fatal. The alternate option for such children is palliative care, which we opted for as, that was the best alternative for our son to avoid pain in his last few days and that his last few days would be spent in loving company rather than fighting the rigours of invasive surgery.
This has been arguably the biggest and thus far challenging news that has impacted us as a couple and now as parents. However, we are trying to be positive and embracing this situation so that we can help future generations and help keep our son’s memory alive by doing good. We have chosen to help raise awareness and funds so that in the future there are additional and more successful treatments that other couples and children may benefit from.
We believe it is pointless concentrating on negatives that we cannot ultimately control, but instead, we want to concentrate on the positive actions and things that we can control and have. Granted our sons passing was and continues to be incredibly challenging, however, that is overshadowed by the joy of his memories which will last with us for a lifetime.
Sanam and I already consider ourselves lucky beneficiaries of all the hard work done by British Heart Foundation. Namely because this issue was spotted early. Due to the research and advancements in medicine, conducted by British Heart Foundation in the last 30 years, we were able to make the most of the time we had with our son and not take it for granted.
The marathon is one of the toughest physical things I will undertake given I am not much of a runner. However, I want to try and get off my couch and start doing things and getting out of my comfort zone to help our son's, and now, our cause....to try to make a positive difference.
Even though our son has passed away, I consider myself one of the luckiest people on the planet as I have my health and I am lucky enough to call myself dad to Idrees. Idrees, against all odds survived and thrived in the womb. He gave us so many memories, such happiness and taught me so many lessons.
He taught me that like him we all need to be fighters and never complain and to stay strong as he did, in the womb and out during his short stay in this world.
He taught me that we should strive to live life to the best of our ability and not waste it if we have the healthy organs to do so. It is our duty to take care of ourselves and become as strong, fit and able as possible to help those around us who may not be as blessed.
He wasn't taken away too early and we aren't hard done by at all. He lived exactly how long he was supposed to. Saying anything else would imply he wasn't enough, when infact he was more than enough. Sanam and I will be inspired to live better for our son. We are lucky that we have our health and a roof over our head. We shall not waste time that our son didn't get. Completing the marathon will be the first step in achieving this.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Idrees received some of the worlds best care and love from the lovely people at Alderhey Hospital. They cared for him 24 hours a day like he was their own. Sanam and I will hopefully be volunteering for them through the year. For all their amazing help, we will forever be grateful.
Finally, anyone facing similar circumstances or would like to know more of the coming months, please also visit a very helpful and important charity 'Little Hearts Matter' (http://www.lhm.org.uk). It is an invaluable charity which concentrates its efforts on providing information and support relating to children born with half a heart. On this particular instance, I have opted to run for British Heart Foundation as that is the main body in the UK advancing the science/research on this area. However, through the year I plan to help raise awareness for Little Hearts Matter too for the important work they do too.