“He just wants to be alive, this kid.”
Born 10 weeks premature, Jacob Sim – known as Jake – is thriving. But even at the young age of eight months old, he’s had to fight for his health.
Jake was born with a heart defect, Tetralogy of Fallot, which means less blood flows to his lungs, and as a consequence, the level of oxygen in his blood is low.
A true little warrior, Jake underwent his first heart surgery this year. Although it was a success, it resulted in a life-threatening infection, and six touch-and-go weeks in intensive care.
‘We knew there might be something not quite right’
Dedicated mum Katie, 31, hopes to raise awareness of Jake’s life-long heart condition, and also help other parents in similar situations to relate.
“From the first 12-week scan we knew there might be something not quite right,” said Katie, who received unusual blood results early on in her pregnancy, which indicated she was at a higher risk of developing pre-eclampsia.
A condition that can affect pregnant women, the exact cause of pre-eclampsia is unknown. However, it’s believed it could be caused by a problem with the placenta and can cause high blood pressure, protein in urine, as well as a number of other symptoms.
“We were fortunate time wise when it came to scans because you’d just started being allowed to have partners along,” explained Katie, who fell pregnant during the covid pandemic.
“Thank goodness because it was bad news from there on out.”
Pre-eclampsia can also cause low birth weight in babies, and so Katie was offered extra growth scans as a precaution throughout her pregnancy.
Blind sighted by diagnosis
But it was during a 20-week ultrasound – which had to be carried out three times due to baby moving around so much, making it difficult to scan – that Katie and her husband John, 30, were given the shock news that a condition had been detected in their unborn baby’s heart.
“We were completely blind sighted when Jake was diagnosed,” Katie said.
A sonographer diagnosed Jake with Tetralogy of Fallot, which is a congenital heart disease.
Katie added: “We were in complete shock and just did all the research we could.
“We weren’t thinking ‘okay, what next?’. We were just trying to concentrate on the positives.”
Pre-eclampsia: ‘I wasn’t expecting to be told that’
By 28 weeks pregnant, Katie and John knew Jake was a small baby, but another scan at 29 weeks revealed he hadn’t quite grown enough.
Katie’s placenta was also showing signs of “shutting down”, and doctors told the first-time mum she’d likely need to deliver in two to three weeks.
As if being told she’d have to give birth in two to three weeks wasn’t already a shock, Katie barely had any time to digest the news when she was told days later she had indeed developed pre-eclampsia.
With her blood pressure sky high, Katie was then told she’d have to deliver her baby in a matter of days.
“That was just the shock of our lives. Beforehand we were told everything was fine, so that just shows how quickly things can change. I wasn’t expecting to be told that,” she explained.
Covid restrictions and neonatal
After a steroid shot to mature baby Jake’s lungs in preparation of being born premature, Katie was transferred to Royal Hospital for Children and Queen Elizabeth University Glasgow to give birth.
At 30 weeks and one day pregnant, on November 26 last year, Katie underwent an emergency c-section and brought little Jake into the world.
“He was very small at just under two pounds six and with a heart condition, but the doctors were impressed with him,” said Katie, of Peterculter.
Jake was taken to neonatal after he was born, meaning several painful hours apart for mum and dad.
And with covid restrictions in place, it wasn’t even straight forward for husband John to visit Katie.
She said: “It was so horrible. We had to juggle partners coming in on the ward and co-ordinate who could come in when… it was pretty awful.”
‘There’s no worse feeling… leaving your baby every single day for 10 weeks’
A strong little soul, Jake was allowed to be transferred from Glasgow back to Aberdeen 10 days after he was born.
He then spent 10 weeks in Aberdeen Maternity Hospital’s neonatal ward, although Katie was discharged after three days – meaning even more heart-wrenching time apart for the family.
“There’s no worse feeling… leaving your baby every single day for 10 weeks.
“You can’t convince yourself that him being in hospital is better than being home with you – even though you know he’s well looked after.”
From neonatal to intensive care
On April 1, Jake was strong enough to undergo his first heart surgery – a procedure which saw surgeons use a shunt to encourage more blood flow into his lungs.
Although the operation was a success, Jake then contracted necrotising enterocolitis, which is serious illness in which tissues in the intestine become inflamed and start to die.
Seriously unwell and being cared for in the intensive care unit (ICU) at the Royal Hospital for Children in Glasgow, Jake wasn’t given a good survival rate by doctors.
It’s the one time I find extremely difficult to talk about… I can’t relive it.
Kitted out in full PPE, parents Katie and John were able to visit Jake while in ICU, but at times had to wait hours to see their son as surgeons performed surgeries on the ward, to avoid taking sick children to theatre in the pandemic.
Katie said: “Usually you’d be able to mingle with other parents on the wards, but even getting a cup of tea at times was a mission with the restrictions.
“So it was quite hard and felt isolating in that sense.
“It’s the one time I find extremely difficult to talk about… I can’t relive it.”
Thankfully, Jake battled off the infection and pulled through.
After a spell in hospital in Aberdeen again in May, he was fully discharged for the first time in June this year.
‘He has a broken heart, but he’s on the mend’
“Looking at him now you wouldn’t know he’s been so sick,” says proud mum Katie.
“He doesn’t look like an eight-month-old baby – more like a five month old. But he’s doing everything he should be doing.
“He’s loving life and absolutely thriving.
“We’re so proud of him. He’s a fighter and such a happy baby.”
The future does hold further surgeries for Jake as a result of his heart condition, with one potentially as soon as next year to fix a pulmonary artery and patch a hole in his heart.
Cardiologist care will follow Jake throughout his life, with surgery potentially needed as an adult too.
But for now, he’s blissfully content with playing with his toys, enjoying time with his family and taking part in fun sensory classes with his mummy.
“He just wants to be alive, this kid,” said Katie.
“We’re now trying to get on with life. We know there may be things that could occur in the future because of his condition like cerebal palsy, but we’re just happy he’s meeting his milestones now.
“He’s like any other baby at the end of the day – he has a broken heart, but he’s on the mend.”
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