The parents of a toddler who was born with chronic lung disease and brain damage have said they 'live in fear of the day they can't resuscitate him. Laura Wingate and Marcus Dicks, from Inverness, are round-the-clock carers for two-year-old Theodore, who was born at 31 weeks just before the pandemic hit in March 2020.
Theodore is wheelchair-bound, ventilated and tube-fed. Due to his extreme health issues, he was hospitalised until his first birthday and doctors even wrote a medical paper on his condition to help future sufferers as they have not yet been able to pinpoint a diagnosis.
The tot's complex care needs, which include reliance on life-giving machines, also mean that NHS staff need to be on hand in the family's home every day. On the days that is not possible, the couple, who also share a five-year-old son, Isaac, are left fighting sleep and working in shifts to ensure they are on hand to care for their son at all hours.
Laura, 25, who has given up work to be her son's full-time carer, explained: “When Theodore was born I didn’t even get to see or hold him. He couldn’t breathe. Doctors took him away to ventilate him using a method that had never been used on a baby so small.
"It saved his life, but that was just the start of our fight. Nurses watch Theodore overnight so we can sleep but if they can’t make it, we need to stay awake by his side in case he stops breathing.
"We don't have a normal family life. We can’t bundle the kids into the car and go for a walk because Theodore’s wheelchair won’t permit us to take him off-road and every time we go out, we need to pack up all his medical equipment.
"As Theodore can't be left with anyone who isn’t trained, we can’t have our parents come and babysit, either."
Marcus said: “Nurses watch Theodore overnight so we can sleep but if they can’t make it we need to stay awake by his side in case he stops breathing. We’ve been his round-the-clock carers for a year now and we live in fear of the day we can’t resuscitate him.”
Laura found out she was having twins in 2019, but heartbreakingly lost one of her children during the pregnancy, which she says was her 'first sign that was something was wrong'.
At 31 weeks, doctors at Raigmore Hospital weren't happy with how the pregnancy was progressing and expressed concerns for Theodore's wellbeing, so decided to deliver him by Caesarean section on March 8, 2020.
After hospital staff had profound trouble with Theodore's airway, medics from Glasgow were flown in to use an unprecedented method on the youngster, which was successful. He was transported to the Queen Elizabeth University Hospital where he stayed for the next five months.
But during this already traumatic time, Theodore's parents were hit with even more devastation when Marcus lost his job.
Since then, the couple have been struggling to make ends meet, particularly during the current cost of living crisis as they can’t simply switch off the crucial machines that Theodore needs to save electricity.
Marcus, 30, said: "I was just about to sit my bus driver’s licence test then lockdown happened and they couldn’t put me on furlough because I started after the cut-off date so I found myself unemployed while caring for Theodore.
"We had to try and get the benefits sorted out while we were in the hospital in Glasgow with Theodore. It was all very difficult and stressful.
"My part time job is due to end in four weeks and that's when things will get harder again. We shop for food on a strict budget, fuel is a back breaker and car repairs are forever eating whatever small savings we manage to make.
"Theo has two ventilators, a sats monitor, nebuliser, two oxygen concentrators, adjustable bed, two suction machines and a humidifier just to name his main electrical. We used to pay £60pm for gas and electric but now we pay £200 and are struggling to stay in the green."
In a bid to navigate their way through financial worry, Laura and Marcus contacted Edinburgh-based charity Children's Hospices Across Scotland (CHAS) who provide 24-hour care to vulnerable kids and help their families.
Now, the family are receiving greater support at home, Laura is being assisted with funding to acquire a driving licence and they are no longer left "counting pennies" to survive.
Respite has also been put in place in the form of Robin House hospice in Balloch, which has been "like a breath of fresh air" for the youngsters and something which the parents say they would be "lost" without.
Laura added: "Although Theodore is much better than he used to be, there remains a high risk to life because if he gets too worked up, he can lose his airway and require resuscitation.
"The CHAS at Home service means we don't have to constantly think about possible places we could stop the car in an emergency if Theodore was to become unwell when we're not in the house.
“If we didn’t have this help, our family’s quality of life would be lessened. There wouldn’t be anyone there to help us out in the way that we need or provide a bit of relief and respite.
"We’d just be stuck in the same cycle, never getting a break and never having someone to lean on. It's helped massively."
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