As brave Wyatt Makwana prepares to celebrate his first birthday next weekend, his family are hoping to raise awareness of the condition that has affected his life.
The family are planning a barbecue with all the people who have supported them over the last year.
Here, his father Brian Makwana, tells in his own words what life has been like during that time for him and his wife Sam.
“No child opts for a debilitating condition or cancer or any other heart rendering problem associated with a child at birth or indeed at any time of its life. No child wants to be a hero or a warrior fighting for its own life.
“To watch your child die in your arms hours after he or she is born has got to be one of the most traumatic experiences a parent can go through.
“Worse is to not understand why your child had to die.
“Many childhood diseases and conditions are well documented and supported which does not ease the pain but at least a parent knows that everything possible is being done for the child with research and modern technology.
“This is not the case with CDH. Congenital Diaphragmatic Hernia.
“CDH affects one in 2,500 babies born and one in every two born will die.
“Cystic fibrosis affects one in every 2,500 babies born, the current average lifespan of someone with cystic fibrosis is 41 years old.
“This is a comparison of statistics, not a debate of the severity of childhood conditions.
“One condition is well known and has ongoing support and research at all levels. The other has not.
“Many doctors and nurses are only vaguely aware of CDH and there is little if no Government support and research.
“One reason is that if a child survives and has the operation to correct the hernia it is no longer a CDH child, it now has respiratory or heart problems or any of the many other problems caused by gestating with your organs inside your chest cavity.
“If a CDH child dies after the corrective surgery the cause of death is seldom given as CDH and consequently affects the awareness of the condition.
“Awareness of CDH will generate funding which will generate research which in turn will, like Cystic Fibrosis and many other diseases and conditions, help to beat the appalling, heart breaking, odds. A CDH child is not a hero, he is a victim of circumstance, a CDH child just like every other baby just wants the chance to live, and that chance comes from the real heroes, the people who are fighting to raise awareness of CDH and the people who are helping them to do it.
“CDH UK is almost single handedly trying to raise funds and level of awareness to a stage where meaningful research can be carried out and make inroads into increasing the odds of survival.
“As with most unknown conditions you never get to hear about it until it affects you.
“Wyatt Makwana was born with CDH on April 18, 2014 and on April 19, was baptised in his cot in the intensive care unit. He was not going to make the morning. In nothing short of a miracle and the care of a doctor who would not give up Wyatt was put on a full life support machine that allowed his lungs to develop enough to have the corrective surgery.
“At the time of writing Wyatt is 11 months old and still on a tracheotomy and being fed through a peg in his stomach. All problems caused by the original condition but not recognised as such medically. He is just a little child who has respiratory and eating problems.
“To raise awareness of CDH I have entered Team Wyatt into this year’s Rat Race to raise funds and awareness for CDH UK.
“Team Wyatt, ten rather overweight, unfit people will be giving it a go, to raise CDH awareness and in memory of little Axel Christie who was in hospital with Wyatt but sadly did not make it.
“If you would like to sponsor the brave Team Wyatt please either visit http://www.mycharitypage.com/Wyatt2014CDH/ or contact me on 074524117.”