Bolton: Worry over daughter with down syndrome after injury

It was initially thought in October that five-year-old Isabella Dawson, from Horwich, had a stroke as she lost all movement in her left side but had no facial symptoms or symptoms of a broken neck.

She was admitted to Royal Bolton Hospital before being transferred to Royal Manchester Children's Hospital, and it was discovered during an MRI scan a couple days later, that she had broken her C2 vertebrae, which compressed her spinal cord, causing the stroke symptoms, and loss of movement in her left side.

Isabella’s mum Julie said: “As parents, we are where we need to be for Isabella and she is a priority for us, but this has taken its toll on the whole family.

Isabella in hospital attached to her equipment (traction) (Image: Public)

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“When both parents are on Statutory Sick Pay it doesn't even cover the mortgage, let alone the household bills, nursery, fuel, and everything else.

“Travelling to and from hospital every day, always in rush hour is costly, but necessary to try and hold the family together.

“Isabella’s sister Felicity, who is only three, is struggling mentally as she misses having Isabella at home, and although we take her in at weekends, the ward was recently locked down due to a bug, so she couldn't come and visit.

"And when you have one child in a bed and an active three-year-old, there's only so much you can do to keep them entertained. 

“We aren't sleeping well as we're either in a hospital with Isabella awake and crying at night due to the noise, or we're home doing housework after Felicity has gone to bed, and trying to figure out how we pay the bills.

From left to right: Felicity, Julie, Isabella, and dad Mark (Image: Public)“We try to spend quality time with Felicity too, who has become very clingy and it's a fine balance of trying to make sure we're being the best parents to both girls and that they're both getting what they need from us.”

Isabella who is usually very active, has had to remain still and keeps asking to go home, to school to see her friends, or to the park.

Julie says if a person with down syndrome has neck instability, some will show symptoms such as unusual head posture or deterioration in the ability to manipulate things with hands, but for the majority of people, there will be no symptoms and there are no reliable tests that can show whether there is neck instability.

Because Isabella has down syndrome, Julie says it is expected that her ligaments will be loose, which is why when her bone was broken it was able to move into her spinal cord.

Prior to this Julie says that the family were unaware that Isabella had loose ligaments due to down syndrome, and that this could mean she is more vulnerable if she gets an injury.

Julie added: “This was only brought to light following the broken bone that she had neck instability, and is why the specialists didn't suspect a broken bone to be the cause of her left sided loss of movement.

"It is important for other families who have children with down syndrome, to know about the risks of loose ligaments."

Isabella now (Image: Public)The family’s main concern about neck instability is the increased risk of spinal cord damage.

Julie added: “In Isabella's case, the trauma she suffered was caused by a child running into her while playing, and knocked her off her feet, onto the hard ground, causing the break, albeit unknown at the time, as she doesn't display signs of pain in the same way as a typical child.

“People with down syndrome have a high pain threshold and don't display signs in the same way as a typical person. 

“Isabella was a little unsteady on her feet prior to the accident, so when another child knocked her over, it wasn't our first thought that she could've broken a bone.”

In order to treat the broken bone and stop any further damage to her spinal cord, Isabella underwent surgery, meaning she had to be attached to a halo ring, with eight pins screwed into her skull.

Isabella remained attached to this equipment for several weeks, meaning she was unable to move and play.

Simple things like having a cuddle were impossible due to her position and the pins sticking out.

Isabella and her sister Felicity (Image: Public)Julie added: “This was particularly hard on Isabella who loves giving cuddles, and especially hard for her and her sister Felicity to interact together.”

Isabella’s old nursery Croft House Nursery held a fundraiser during Halloween week, where the children wore fancy dress outfits, and some people voluntarily donated money for Isabella.

Julie said: “We were really touched by the money raised for Isabella, which was just over £200, and grateful to those who'd sent cards or drew pictures, and especially to Croft House who have been so kind and generous, and made sure Isabella's sister Felicity, who attends the nursery, is coping well.

“We'd be lost without Croft House.

“We don't have a wide support network as some family found it difficult to accept Isabella, and Croft House have become a part of our extended family.

“We've been overwhelmed by their support and that of other parents at the nursery.”

The money made it possible for the family to buy Isabella a Toniebox and sensory toys to keep her entertained whilst she remained attached to the equipment, with only the ceiling to look at due to the angle of the equipment.

After seven weeks, Isabella had surgery, where a piece of her skull was removed that was then fastened to the broken bone to keep it in place.

Isabella post-surgery (Image: Public)The bones should join over time, and her collar can be removed after a further three months.

Julie said: “Although surgery was deemed a success, the bone tied in place during surgery has moved, and whilst it isn't pressing on her spinal cord, it has moved towards it.

“It is now a waiting game to see if the bone continues to move, and if the bone will fuse. 

“It's an unknown and we have to take each day as it comes.”

Isabella is now eating probably a third of what she was eating prior and is struggling to hold her head up and needs additional oxygen at night.

She's been bedbound and immobile for 10 weeks.

Julie added: “Having been in traction (equipment) for so long, it has affected her muscles which are now weaker, and has affected her more than a typical child, due to her lower muscle tone which is associated with down syndrome.

“She's begun physiotherapy to strengthen her neck, and her core muscles with the aim that she can hopefully walk again, but it's a long road to recovery, especially when we don't quite know what's happening with the C2 vertebrae that's moving.”

Julie says that if the bone stabilises and joins together, provided she responds well to physio, Isabella can hopefully return home by the end of January, or the middle or end of February.

Isabella struggles with lots of noise, and the hospital ward has created sensory overload for her, which Julie says has had a massive impact on her recovery.

Julie said: “She's a shadow of her former self and has become quiet, withdrawn, and chews on her fingers due to the distress.

“Isabella doesn't say many words and mostly uses Makaton to communicate so it's vital one of us is with her.

“Our children will always come first. 

“We make a sandwich or take a pot noodle to hospital so at least we have something to eat each day.

“We can't see into the future, and we don't know how much Isabella will be able to do, or how much extra help she'll need, and how that may impact our ability to work as we previously did.”

Isabella misses her school friends and teachers, and the family are worried about the impact this will have.

Julie added: “She's missed out on being able to take part in the school nativity, or Christmas fair and visit Father Christmas, and we've not had our annual trip to see Father Christmas at Smithills Farm.

“We'd usually take a walk most nights around the cul-de-sac to see all the Christmas decorations, and this year we haven't been able to do any of that.

“We're spending so much time travelling and then split between hospital and home, and trying to make sure we spend enough time with Felicity, but actually she's missing out on so much as we haven't taken her to see Father Christmas, as it feels wrong without Isabella and then we question whether we're being bad parents.

“We've put the tree up at home for Felicity as she's very excited for Christmas, but in reality, how we manage to buy presents or celebrate is unknown.

“We'll be spending Christmas day at hospital so at least we'll be together, and while we keep saying we'll have plenty more Christmases in the future, it seems so harsh to ignore this one so it's trying to find that balance.”

Isabella has been using a sensory voyager light and projector in hospital, which Julie says has been fantastic in helping her when she becomes distressed, but they are costly to implement at home.

Julie said: “This has taken its toll on us all mentally, physically, and emotionally.

“We're utterly drained.

“Isabella is generally a happy child who rarely cries, however hospital has been very distressing for her and she's now crying and saying ‘ow’ during and after physio.

“We are worried about what the future holds for her, but we remain hopeful.”

Click here (www.gofundme.com/f/equipment-for-isabella-after-breaking-a-neck-bone) to support the family in any way possible.

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