A family have issued an emotional plea to help their seriously ill baby who was born with a rare heart defect.

Jacob Ingleby was delivered by emergency caesarean section after doctors noticed he was in distress during labour. After the procedure, the newborn was struggling to breathe.

Tests later revealed Jacob had the rare condition total anomalous pulmonary venous drainage (TAPVD), thought to affect just one in 10,000 babies. 

Jacob was was taken to Bristol Royal Hospital for Children for emergency open heart surgery the next day. While under the knife, he suffered a stroke, which damaged half of his brain’.

Severely disabled, the now 16-month-old, from Falmouth in Cornwall, requires round-the-clock care. 

TAPVD is a heart defect that sufferers have since birth. It occurs when oxygen-rich blood leaves the lungs and then enters the incorrect part of the heart. This forces the lungs to cope with high blood flows. 

The condition affects around one in every 10,000 babies born in the US every year, according to the Centers of Disease Control and Prevention. Its prevalence in the UK is unclear. 

TAPVD can only be treated by open heart surgery, which requires patients have a bypass machine to pump blood. 

However, these are not as effective as the heart, with some organs getting reduced blood flow. This can result in a stroke if the brain is affected. 

Bypass machines can also trigger inflammation and the release of chemicals that cause clots to break lose and embolise, which can also cause a stroke, according to Cincinnati Children’s hospital. 

Doctors first noticed something was wrong when Jacob’s mother Kelly Ingelby, 33, was pregnant. They discovered he had an enlarged artery but told Mrs Ingelby and her husband Jake, 35, ‘not to worry’. 

But when Jacob was born last August, it became clear his condition was much more serious.

Speaking of his delivery, Mrs Ingelby said: ‘Jacob was taken away from me straight away because he had become very poorly and I didn’t get to see Jacob for quite a few hours afterwards. 

‘The staff were lovely and ended up bringing me a photograph of Jacob because I couldn’t go to see him.

‘I had two other little girls as well – he’s got a six-year-old sister and a two-year-old sister. Everything felt very confused and lonely and worried’.

Once diagnosed, Jacob was rushed to Bristol for surgery with his father, while Mrs Ingelby stayed at the Royal Cornwall Hospital to recover from her C-section. 

Although the surgery successfully treated Jacob’s heart defect, he suffered a stroke during the procedure that damaged his brain stem, which controls everything from swallowing to breathing.   

The youngster now has to be fed through a tube and battles near-constant infections due to his suppressed immune system, according to his father. 

Jacob also has epilepsy, as well as limited use of his right arm and extremely poor vision. 

Although he is showing some signs of progress, his parents are keen to give him the best quality of life possible and struggle to afford regular trips to see a specialist in Bristol. 

Writing on their crowdfunding page, Mr Ingelby, who assembles clean rooms for scientific research, said: ‘He will need more surgery within the next few months which means more time off work and that also takes its toll.

‘My wife has to make several trips a week to the hospital every week for meetings with the consultant and other health professionals.’

Mr Ingelby, who also volunteers at the Royal National Lifeboat Institution, is asking well-wishers to donate £1,000 towards his son’s care.

He added: ‘We are wanting to raise this money for aids in development and soft play mats so he’s safe when on the floor doing physio and also fund expensive trips to Bristol.

‘I’m a very proud person and it’s taken me a long to ask for help but I’m at the point where my family needs it’.

To donate, please visit here. 

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