This time five years ago I was sitting on a hospital ward with Graham waiting to hear news of Star who was in the operating theatre.
This was the beginning of the end of an eighteen month journey which started when Star woke up one morning with a wonky neck. We took her to the GP who told us she had tonsillitis. I knew he was wrong though, so I took her to A&E. They said she had a torticollis and would be fine in 48 hours. She wasn’t, she got worse. Sometimes as a parent you have to tune into your instincts, even when the Dr’s turn you away, you have to persist if you feel something is wrong.
Three more trips to A&E and eventually they listened to me and did a scan. She was admitted immediately. One of the discs at the top her spine had twisted out of place. She was give a bed and some muscle relaxants, when they didn’t work we were told they were trying to find a traction bed. We were allowed home for the weekend with Star in a neck collar. When we arrived back on Monday morning the traction bed had been found and it looked like some kind of Victorian torture contraption. Thankfully they decided against using it and Star was sent home again.
Sadly, it didn’t stop there though because they started small and worked their way up with treatments. Physio made her worse, medication made her worse and eventually she was taken to theatre for a manipulation to put the bones back into place. She came out of theatre in a halo, which is not as nice as it sounds. A metal ring is screwed into the skull and it has four long poles which are attached to a plastic vest. It cannot be removed unless by a surgeon.
It was horrific, but after a few months we were quite used to it. My little Star was just eight years old at the time.
She even had to wear it in bed.
It Didn’t Work
As soon as the halo was removed in march 2014, it was obvious that it hadn’t worked. Star’s neck flopped back into it’s former abnormal position and she was back wearing a collar. We were so down about it, but Star took everything in her stride.
Then we heard that she would have to be fixed with screws and titanium plates, it was the only option. This involved two operations, the first was on 9th June 2014 where they manipulated her again and replaced the halo. Then two days later they took her for her plates and pins. The bone had deteriorated so much they had to do a bone transplant from her skull. The operations took hours and all we could was wait and pray that she would be okay. While staying in hospital we had been witnesses to two child deaths on the ward. It really is a horrible situation to be in and I wouldn’t wish it on anyone.
Star was back on the ward at 7pm, half her head shaved and the halo in place for another three months.
A Life Time Ago
In one sense it feels like it was a life time ago, so much has happened since then and my little girl has grown into a young woman of almost fourteen years. In another sense I can remember everything about that time like it happened yesterday. It is difficult to even begin to imagine the emotions you go through while waiting for your child to be returned. And the hospital was like a second home, we didn’t go to outpatients for appointments, we just went straight to the ward. We knew everyone, and everyone knew Star.
Now my girl barely remembers it all now, well apart from the nice thing like the toy room on the ward. She remembers her home tutor that she had for a whole year while recovering, and not having to go to school. Surprisingly has forgotten about the halo she wore twice. She even forgot about her scars, well she can’t see the one on the back of her neck or head. She has noticed the ones on her forehead but they are disappearing well.
The Future for Star
During all this time it was discovered that Star had a connective tissue disorder and she was eventually diagnosed with Elhers Danlos Syndrome. Since then she has been seen by a geneticist who believes she may have a different connective tissue disorder and is convinced she has Marfan Syndrome. There are more tests to be done because the test for Marfan Syndrome involves the febrillin gene and Star doesn’t have that. But, there are 3000 different mutations of the gene so her DNA is being tested again. She is also having her chromosomes tested as the geneticist thinks there may be a connection between her physical disabilities and her autism.
In the meantime, Star is working hard at school and will be doing her GCSE’s next year. She gets a lot of help and support and the school, although mainstream, are very understanding. I do have hopes that her future will be fine so long as she gets the extra help after leaving school.
I worry so much about my children, especially now that I am sick. While Star was ill I was running around like crazy, taking the other two to school and nursery and the older kids to college. Taking Star to her appointments at the hospital, or even taking it in turns to stay with her overnight. I was fit and able to deal with getting up several times every night. I managed that, but if any of my children needed me like that now I would not be as much help.
It’s hard to imagine how different life was five years ago, but that day changed everything and most probably saved my daughter’s life.
Poor Star. She really is a trooper. She really has been through it and still is going through it with the tests. x
Wow. Things like this are hard but hopeful memories for the parents too. Reminding of the bad times, how far you’ve come and how further still you have to climb.
My daughters have undiagnosed short stature (no recognised dwarfism or similar genes) and autoimmune hypothyroidism. We would never have known my eldest had it unless my youngest hadn’t have had a high Nuchal food at the 13 week scan kicking off test after test after test that all came back fine just small, fine just small etc. But we’ve been through so much testing since November 2015 including days in hospital and painful ones i sometimes feel my 6 year old is going to crack, yet she fights on.
Like you must be in in awe of the resilience and utter fight that is in children to keep keeping on. You are doing so well to keep on yourself too x #MMBC
Thanks for sharing this inspiring story. Kids are so resilient.
Oh goodness that must have been scary. What a trouper star is. Kids really do bounce back xx
Oh Anne, it must have been so tough for you all. Star really is a star! She has been through it bless. x
Gosh, I can’t imagine what it must of been like, I can totally get the anxiety, I think anyone would be in your situation. You sound amazing parent Anne, you can onlu do what you can do which is hard for a parent. I am autistic though I do not have physical condition I can understand frustration when you have drawbacks as a parent because you want to do the best for your child. X #abitofevetrything
It is really difficult sometimes, but thankfully she doesn’t have to go to hospital too frequently now. It’s strange going to see the same Drs we’ve seen for years and turning up in my wheelchair now.
It is so impossible waiting for them to return from theatre. It sounds like you and your daughter have been through it. You are clearly both very strong people. Thanks for sharing with the #DreamTeam
Thank you Kirsty, we try out best.
Wow, you’ve been through a lot as a family medically. It’s a testiment to your patenting that Star was able to get through her surgeries and treatment as qell as she did.
She’s a little Star (or a big one now that she’s actually taller than me!) x
Your Star is a real fighter, and so are you!! I can only imagine how stressful it must be, but you both are doing great. Keep going, #itsok, love and luck.
Thank you Nicole x
As someone who had a full spinal fusion at age 14 for severe scoliosis, caused by a rare progressive neuromuscular condition – I sadly know all too well what you went through as a family. Traction is very difficult but it sounds like you as a family adapted well to the changing circumstances. Has Star received an official diagnosis since you wrote this? #ItsOK
Hi Fiona, We won’t know for sure whether she has Marfan Syndrome or another type of EDS until her results come back. We were told this would not be until at least August, so it’s at the back of my mind for now. She certainly has a connective tissue disorder of some kind. She has mild scoliosis so I’m hoping there won’t be any need for any more operations. It sounds like life hasn’t been easy for you but I admire how you cope so well. x
Oh wow. That is a true story of how resilient kids can be, how amazing their inner strength is, and in turn how much us as parents go through. You are amazing! She is amazing. Fingers crossed you get a final diagnosis soon.
Thanks for linking up to the #ItsOK Linky