A Child with Special Needs has Karen's Heart

On the eve of our first Aberdeen Kiltwalk I thought we’d start with a Kiltwalk Quiz, cause everyone loves a quiz, don’t they?

First question, Quadriplegic Cerebral Palsy, does anyone know exactly what it is?

What about Jejunostomy feeding, any idea what’s involved?

Here’s an easier one, Supraventricular Tachycardia?

Epilepsy? Well that’s one I know about as I have a friend who is an epileptic and it can be pretty scary when they have a seizure.

Microcephalus? No me neither, the answer is it’s an abnormally small head and underdeveloped brain resulting from defective genes or developmental deficiencies.

So let’s go back to the start and provide some answers for those of us fortunate enough to have never come across these conditions before.

Quadriplegic cerebral palsy is the most severe type of cerebral palsy, caused by extensive damage to the brain. A child who suffers from Quadriplegic cerebral palsy will have a high degree of stiffness in their limbs, and be unable to walk. At the same time, their neck muscles will be very loose and they may have problems supporting their head. They will find speaking difficult, and have moderate to severe learning difficulties. They will also suffer frequent epileptic seizures.

Jejunostomy feeding is a tube placed into your child's stomach and small intestine. The tube is used to vent your child's stomach for air or drainage, and / or to give your child an alternate way for feeding and needs to be cleaned every four to six hours.

Supraventricular tachycardia (SVT) is a rapid heart rhythm originating at or above the atrioventricular node. Supraventricular tachycardias can be contrasted with the dangerous ventricular tachycardias, which are rapid rhythms that originate within the ventricular tissue.

All pretty disturbing stuff I’m sure you’ll agree.

So here’s the final question in today’s Blipfoto, how would you cope if one of your children had any of the above conditions? So OK I lied, that wasn’t the last question, this is. How would you cope if your child had all of those conditions?

Personally, I have no idea, but that’s what faces one of our Kiltwalkers, Karen Robertson every day as she looks after her miracle boy, Kieran.

As a 7 week old baby boy, Kieran was not expected to live, however I'm pleased to say Kieran celebrates his 10th birthday on 25th September. He’s Karen’s miracles boy.

We came across Karen last year when she took part in the Angus Kiltwalk, or to be more accurate, Karen came across us. Karen was originally looking for a cerebral palsy charity in Scotland that would benefit from any fund raising idea she came up with. However all she found were charities based in England. Therefore, Karen continued her Google search for Scottish children's charity events, until she found what she was looking for. The Kiltwalk!!

As a Mum who has had her heart stolen by a boy with special needs, she knows how hard it is to care for a child with any form of medical condition. This meant Karen couldn’t believe her luck when she found out The Kiltwalk not only helps Scotland's Sick Children, she also realised Kieran would benefit directly as, together, they spend so much time in Aberdeen’s Sick Kids Hospital.

Kieran was born as a perfectly healthy boy, Karen’s third son. Like any Mum she couldn’t wait to take him home to share him with his family. However, in the first few weeks at home Karen found that Kieran was having difficulties feeding, so sought help from the experts. Little did she know this was to be the start of a journey she just couldn’t off imagined.

It turned out Kieran had a severe milk allergy and was immediately admitted to Yorkhill Children’s Hospital, where he spent 4 weeks in intensive care. Karen was told to prepare for the worst, as Kieran’s coma scale was far too low to survive. The impending death of anyone is hard to take, but when it’s the child you’ve given birth to, it’s even harder to imagine. It was even more devastating for Karen as a few years earlier, she lost her child, another son, to cot death.

Karen couldn’t bear the thought of losing a second child, so she made all the deals she needed to make in her head and sat in the intensive care unit, not eating, not sleeping, willing Kieran to live.

What Karen wasn’t to know as she sat there, hour after hour was that Kieran is just like his Mum, a true fighter and thankfully he pulled through. However it was at a price, as he had been left with quadriplegic cerebral palsy, epilepsy and visual damage. The price of caring for a child with special needs wasn’t a currency Karen dealt in, the only currency she dealt with was the love for her child. A love that’s priceless.

Karen was delighted to find out Kieran could move back to Aberdeen Sick Children’s hospital in time for Christmas, which meant she could at least spend some time with the family. However as they bedded into RACH, they were to find out that Kieran also had severe stomach problems. Problems so severe, Kieran has had 40 surgeries gastro alone, since birth.

As if cerebal palsy, visual damage, epilepsy and gastro problem weren’t enough to contend with Kieran contracted a rare, viral heart disease, Kawasaki at the age of three. Initial prognosis was good and after six months, Kieran was given the all clear and they were told there would be no long-term damage. For those who are still reading, then you’ll not be surprised to hear that’s not how life rolls for Kieran as by the time he reached six, the effects of Kawasaki kicked in and is now something Kieran has to receive treatment for on a daily basis.

With a catalog of conditions where any one seems bad enough, never mind having them all, then perhaps the one that affected Kieran and Karen’s lifestyle the most was reflux.

Kieran’s reflux was so bad that feeding him gastrostomy was becoming impossible as it caused him to aspirate into his lungs. It happened so frequently, most of their time was spent in either High Dependency or Medical wards at the RACH as the knock on effect causes aspiration pneumonia and collapsed lungs.

Kieran’s condition was life threatening as there are only so many times the body can keep recovering from such an ordeal as it creates sepsis as well as pressure on all the bodies other organs, so something had to be done.

The hospital was choosing to go down the route of "disconnecting" Kieran’s esophagus from his stomach to prevent ongoing problems. The only problem is that operations used to establish esophageal discontinuity vary widely, where the surgeon would focus on saving Kieran’s life, not how he would eat again. If Kieran survived the likely initial infectious complications, he would have had to go through further surgery to allow him to eat again.

Remember earlier, when I said Kieran takes his fighting and battling from his Mum? Well Karen didn’t like the thought of this form of procedure, so turned to her trusted friend, Google, for help and her research paid off.

Karen found an article where children with Kieran's needs, were fed by a jejunostomy tube inserted into the small intestine bypassing stomach altogether. So she called Kieran’s surgeon, who admitted he'd never performed such surgery before, but was willing to do it if that's what she wanted?

Karen felt deep down that she didn’t have a choice as Kieran was critically ill by then, as the doctor summed it up, Kieran was running on empty with no reserve tank. Karen didn’t think Kieran would survive any other form of operation, so regardless of the risks involved, she made the decision to allow Kieran to become the doctor’s first patient to receive such an operation.

Kieran was in surgery for over ten hours. Ten hours that left Karen and the rest of her family pacing hospital floors, waiting on news. Finally, just after 7.30pm, Kieran was wheeled into HDU and, with the good news the surgery had been a success.

The surgery really was the family’s last hope and was a roll of the dice, hoping for two sixes and two sixes it was. The jejunostomy feeding means Kieran no longer aspirates into his lungs and two years on from the operation, time spent in RACH has been reduced to almost zero, only having two admissions since then for chest infections.

This has meant that Kieran and his family can lead what to them has now become a ‘normal’ life. As they can now fully enjoy their purpose built home for Kieran's needs.

The improvement in his health and condition has meant regular schooling for Kieran, where he's come on leaps and bounds and is currently on the student council. Kieran is now a level one intentional pupil, which means he can communicate with others via a communication board. This is not only a huge breakthrough for Karen, it’s a huge step for Kieran as this essentially means he exert some control over his life.

At this point I’d urge you to spend a few minutes watching a wonderful video of Kieran laughing away, at his Mum’s expense of course. You can view it here

https://www.facebook.com/photo.php?v=10201916939266139

Life for the Robertson’s is different, as you would expect, however they wouldn’t have it any other way. Every day is a new experience for Kieran and as his video and pictures show he’s a happy fella.

While love for him is unconditional, he also takes a lot of care, which means Karen often gets by on only a few hours’ sleep.

Today Karen is preparing to take part in tomorrow’s Aberdeen Kiltwalk, and while many of our walkers are worrying about have they packed enough Compeed plasters, Karen is worrying about whether she has packed enough medication for Kieran’s sleepover at Nana & Granda's and to see just what’s involved, please have a look here
https://www.facebook.com/photo.php?fbid=10201934969356880&set


I’ve often thought what must it be like to have a child to care for round the clock, however I’ve never really thought about what that means for a parent, or the other children. In reality, it is a huge strain on the other children, as they have to grow up faster than a child should. As a parent, it also means that while your spending all your time with one child, as they fight for their lives, you miss out on simple, yet important things like your other children’s first tooth, first step or first school concert.

These are days that you’ll never get back and I personally had never thought of that side of things before.

This is why Karen thoroughly enjoyed last year’s Angus Kiltwalk, because despite finding it physically challenging, it was the first time in a long time that they’d all been together, on what was such a fantastic occasion and provided memories that will last forever.

The walk was hard, but Karen knew her Mum and kids were waiting at the other end for her, which provided her with all the motivation she needed to keep going.

Kieran, like his mum, isn’t a quitter and fights until he manages to combat anything put his way. The staff at RACH love him and he amazes them all with his courage and determination, letting nothing get him down. That’s why the RACH staff nominated him for Aberdeen champion children of courage award, where he was highly commended,

Karen and her family have been on a really long emotional roller coaster and they know that further heart surgery is looming, however they take their spirit from Kieran and fight on.

The staff at the RACH often tell Karen they could cry for her, asking how she can laugh and joke when Kieran is going through so many issues. Karen has a simple explanation and that’s it's thanks to Kieran that she’s the person she is today, he's her shadow and despite being very hard work, the rewards are worth it.

Kieran has a life expectancy of early teens, however Karen knows he’s defied the odds so many times, he’ll fight all the way to continue beating them so watch this space!!

We wouldn't bet against Kieran either and we’ll be there, with Kieran, to cheer his Mum, Oor Karen over the finish line tomorrow.