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‘My world just crumbled’ - living with Tetralogy of Fallot

By Burton Mail  |  Posted: July 08, 2014

  • 30/06/14 son having open heart surgery Son having open heart surgery....Kayleigh Cox with children Malakai, Elija and Zachariah

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KAYLEIGH Cox was an experienced mother of two found when she found out she was pregnant with Malakai.

However, she was later told she had miscarried but while attending the hospital to remove the remaining pregnancy, an eagle-eyed nurse spotted a heartbeat.

However, she said “my world just crumbled” when she was later told just what would be in store for her little baby.

“It is amazing that the one thing that saved him is now causing all his problems,” she said.

The 26-year-old, of Oxford Street, Burton, is now hoping to raise awareness of his condition which left him with holes in his heart, a damaged aorta and a narrowed heart vessel.

Kayleigh, who, ironically, is a cardiac nurse but for adults, and Nick, 30, a bricklayer, were already parents to Zachariah, two, and 18-month-old Elijah when Malakai, now four months, came into their lives.

“My pregnancy had been fine” said Kayleigh. “We had his pre-discharge check and the paediatrician heard a murmur on his heart and went to get her senior to get a second opinion.

“He confirmed it. So on the Monday he had a scan and I thought it would be fine so I went on my own and they told me over the next few days he will go blue, stop feeding and I’ll have to learn CPR.

“My whole world just crumbled.”

The doctors diagnosed him as having Tetralogy of Fallot – a very serious condition, requiring major surgery. One is a procedure where they open the heart up.

“He has a hole in the bottom chamber, his aorta is too big and the right side of his heart muscle is thicker and the main vessel that takes oxygen round the body is narrow which is why he turns blue. His heart looks like a boot.”

Anyone who has never heard of Tetralogy of Fallot, may have heard of Blue Baby Syndrome but its name changed ‘when they realised that it is just a contributing factor of TOF’.

Since his diagnosis, Malakai has shown everyone just how dangerous his condition can be. On March 20, he had been quite blue around his cheeks and was sleepy so Kayleigh took him to A&E.

“Four days later he was deathly blue and his oxygen level was at 34 per cent and we got to Glenfield Hospital (the specialist heart hospital in Leicester) in 15 minutes with blue lights.

“He can go downhill in the blink of an eye.”

He was in an incubator for 13 days, then while his mother was feeding him in the hospital he went into cardiac arrest.

Thankfully Kayleigh has learnt to watch for the signs. “They put him in the incubator and I just stood back and prayed as they tried to get oxygen into him.

“He had actually also vomited his feed so they had to check his lungs.”

It was inevitable that Malakai would have to endure heart surgery, and he did at just four weeks old. There was an 85 per cent chance of survival.

“We didn’t think about not having the surgery as it was either have it or he wouldn’t be here.

“It was the longest three hours of my life. They put a 4mm stent in his pulmonary valve to allow oxygen through. It went through his groin.

“He did really well, swelled up a bit afterwards but two days later he was back on a normal ward.”

However, the youngster hasn’t escaped open heart surgery, which is due to take place on Thursday.

TOF is incurable but it is a manageable condition where Malakai can have a normal, active life. But he cannot join the army or police force and cannot have tattoos due to the likelihood of endocarditis.

“Even if he has a cough or a cold I can just walk into the surgery and he will be seen and I have 24-hour access to ward 1 at Burton, so we don’t have to go through A&E.”

Malakai now has to take aspirin to stop his blood clotting and four other medicines twice a day.

“When other people ask how we cope we just say ‘this is life.’ We cope so well. Other people’s children are worse off and that is terrible for them.”

Now Kayleigh wants to use Malakai’s condition to highlight TOF as it is still not clear how the five-month-old developed it.

“Anyone can have the condition and can be walking around with it for years and have been very lucky.

“They could tire very easily from not doing much, be eating and eating but not putting weight on (Malakai is five months old and is still wearing clothes for a baby aged 0-3 months). There are also heart murmurs, fainting and they may feel their colour isn’t right.

“They should go to the doctors straight away.”

“Get your babies checked for heart murmurs.

“I will always be grateful to the paediatrician who first noticed this in Malakai.”

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