“Crying could have killed our baby.”

A rare heart condition can make crying fatal

Seeing your baby’s bottom lip begin to wobble is heart wrenching for all parents. But for Aimee and Elliott Joyce that sight brought on a cold sweat, as every time their son Lucas cried, it put his life at risk.
Aimee and Elliott were told by doctors at Great Ormond Street Hospital that they must not let Lucas cry, as a series of heart defects meant that any extra pressure put on his heart because of the tears could be fatal.
“He was four months old and we couldn’t let him get upset.” says Aimee, 26, a hospital care assistant. “We used to cuddle him, give him a dummy, comfort him, do anything to stop him crying.”
Lucas has a rare heart ¬condition, called Tetralogy of Fallot, which occurs in only one in 3,500 ¬children. It is a combination of four ¬separate heart defects, including a hole in the wall ¬between the two ¬pumping chambers.
Sufferers can experience ‘blue spells’, in which their face and body turn blue, as they are not getting enough ¬oxygen.
“These blue episodes can lead to a serious ¬situation,” says Philip Rees, Lucas’ doctor at Great ¬Ormond Street. “If a child is blue for too long it can lead to brain or heart damage.”¬
“Sometimes they don’t survive a blue spell. We do tell families that a child with Fallots shouldn’t get really upset and worked up, as this means even less oxygen.”
After many months of medication and operations, Lucas, now 21 months, is doing well and his parents are keeping their fingers crossed that he won’t need another operation until he is a teenager.
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