Dad describes “roller coaster ride” of emotions after son was born with half a heart
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A baby born with only half a heart who underwent open heart surgery within days of his birth is now facing two more major operations - with a transplant being considered as a possible further option.
Max Gregory, who was born at Addenbrooke's Hospital on January 2, could also be the recipient of a mechanical heart.
He was diagnosed with hypo-plastic left heart syndrome (HPHS) during his mum's 20 week scan, a rare condition affecting one in every 5,000 births in the UK, which means only the right side of his heart developed properly, leaving him with only a 50 per cent chance of making it to his third birthday.
Max is the fourth child for dad Lee, 31, and Carly, 32, who both serve in the RAF at Wyton, and already have Ethan, 7, Ffion, 5, and Darcy, 20 months.
Lee described the rollercoaster ride of up and down emotions as they tried to care for Max, now at Great Ormond Street Hospital in London, as well as the rest of their young family.
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Lee said: "It certainly teaches you to take each day as it comes, make the best of it, appreciate what is important and to share the love around."
He said there had not been any problems with their older children and Carly's pregnancy with Max had been going according to plan until the scan which revealed the HPHS.
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"It just came out of the blue," Lee said.
The condition means that Max's heart struggles to pump blood around his vital organs and that without medical intervention he would die,
Lee said Max was born at Addenbrooke's slightly early but his condition deteriorated and he was transferred to Great Ormond street the same day where he was stabilised.
At just six days old Lee and Carly kissed their son goodbye as he was taken off for surgery. It went well but Max suffered a cardiac arrest and he has battled against a range of health problems.
In the months to come Max will need further major surgery, followed by a third bout when he is aged four to five as surgeons try to get his heart working at the best it can.
Lee said they were "closely watching" two research programmes involving mechanical hearts and blood pumps which may benefit Max.
To make matters worse Ethan was taken ill with an auto-immune condition and has been under treatment at Hinchingbrooke Hospital.
The couple are making regular trips between Huntingdon and Great Ormond Street as they care for Max, who could be a patient there for six months, and the other children.
A gofundme page has been set up to help the couple meet the cost of the trips to London where parking alone can run to hundreds of pounds a week.
Donations can be made to: gf.me/v/c/gfm/connect-the-gregory039s.