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
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.
I’ve only ever broken one bone, my nose. Can that be counted as a broken bone even, isn’t it just cartilage? When I was about six years old I was leaning over my Nan’s fence at the top of her steep front garden. I think I’d spotted a bug or something just below and was taking a closer look. Next thing I knew, I was lying face down half way down the garden with my nose crushed firmly against a large stone, possibly even a brick.
Everyone said I’d fallen, just leaned to far and went over the fence. My memory may be foggy from so long ago, but I knew I was pushed, and I knew who pushed me. But I’ve never told, and I’m not likely to now. Who cares anymore.
I broke my nose and had two lovely black eyes!
Star is not my daughter’s real name. I gave it to her because that’s what she is. For 18 months starting from just before her 7th birthday, she had to undergo countless scans, hospital appointments and operations. She did it all with a smile (well mostly) and that’s why she’s my Star.
She has a condition called Elhers Danlos Syndrome but back then she hadn’t been diagnosed and we didn’t know what was wrong. EDS is a connective tissue disorder and it caused Star to have a craniocervical instability. This meant that her neck became unstable and she was unable to keep it upright. It also caused one of the bones in her cervical spine to chip and break.
My little girl had to have many scans and visited the operating theatre five times in total. She had to wear a halo brace twice. This is a contraption which holds the neck straight in alignment while it heals, it is a metal crown which is screwed into the skull and attached to a plastic body. She wore it for three months each time. She surely is a star just for enduring that. People actually thought we were able to take this off at night! Bathing her was fun as we were unable to get the vest wet so I used to wrap her up in black bags.
It seems like such a long time ago now, although she still bares the scars.
This is my post for today’s Blogtober prompt, Xrays and Broken Bones.
At the top of my page you may notice a tab called My Little Zebra, if you click it you will be taken to a new blog all about my little girl who has Elhers Danlos Syndrome.
As it is EDS awareness month I’m going to share her story here, only a little more condensed.
Starting at the beginning she was born normally, a little early but everything was ok apart from a little panic just before the birth when they thought I might need a C-Section. She was fine, a great weight and looking healthy.
She was a cry baby though, and would scream and scream all the time. The only thing that settled her was lying her on her back and ‘cycling’ her knees. This is a relief for colic which we thought she was suffering from. As she got a little older she was always complaining of her knees hurting and although she met all her milestones and was walking by the time she was one year old, she didn’t like walking much and complained it hurt.
When she was three years old we took her to the hospital because we were worried about the pain she was complaining about when walking. x-rays and tests showed nothing but it was noticed that she had hypermobile knees and ankles. I looked it up and it said that it just meant she was double jointed. So we all battled on.
At six the hypermobility seemed to be getting worse and she was seeing a physio therapist to help her.
At seven she had her first subluxation, in her neck! Of course we didn’t know it was a subluxation back then, neither did the hospital. They tried first with muscle relaxants to treat her, then a collar. When that didn’t work she was given a manipulation followed by a halo. Halo sounds nice doesn’t it, kind of angelic. They are not. Details are here if you wish to know more. In the meantime, here is a photo of my angel in her halo.
A few months later the halo was removed and we were horrified to find that the subluxation returned, immediately. The next step was a fixation and she was taken back to surgery while they fixed her cervical spine with a bone graft and screws. Then they returned the halo!
This worked and her neck was fixed but with only 50 % of it’s mobility. The consultant said her ligaments were particularly stretchy which is why they wouldn’t hold the bones in the place. He never accepted that the subluxation had happened without a trauma, but we know for a fact that it did.
This got me thinking and after a bit of research I learnt that hypermobility + subluxation+ lax ligaments could be Elhers Danlos Syndrome. So I asked for a referral to a rheumatologist who confirmed my suspicions but wished us to see a geneticist too.
You can read what happened at the geneticist here, but in brief, she does believe that she has EDS but possibly not hypermobility type like we suspected. Now she is waiting on further tests to find out if she has another type of EDS and/or Marfan Syndrome.
In the meantime my girl is doing fine, her scars are healing and apart from a couple of subluxations in her ankles she is carrying on like a normal (ish) ten year old.
EDS is a rare condition and even doctors are not totally aware of it. This is why awareness is so important. It comes in many forms and some of them can be life threatening so diagnosis is especially vital. This month is EDS awareness month and the EDS support group are creating a thunderclap on social media set for 20th May. This means that thousands of people all over the internet will get a message about EDS and it will help to raise awareness. To join the thunderclap please click on the badge below. It takes just a moment and will post just one message to the social platform of your choice.
If you would like to learn more about Elhers Danlos Syndrome then please visit the Elhers Danlos Syndrome website. Or ask me, I’d be willing to help with any questions and point you in the right direction for help if you have concerns yourself.
Well it’s not often you see a back to school post in November is it? I’m linking my post up to Small Steps Amazing Achievements but to be honest this is more like a Huge Leap Amazing Achievement.
Today, after being off sick for eleven months, my Star went back to school.
She’s now in year five. She only spent eight weeks in year four. She was already poorly with her neck when she started, her problems had started at the beginning of the summer holidays and she’d already had one spell in hospital and was visiting weekly for physio therapy.
Then early December 2013 she went into hospital again for a manipulation and was first fitted with the dreaded halo.
She was provided with a home tutor, who has been lovely, and has kept up with the same work her former classmates were doing.
The halo was removed in March, but it hadn’t worked.
In June Star was given surgery and her neck is now held together with metal plates and pins, and a bone graft. Again, the halo returned.
Just before her birthday in August the halo was removed again and we had our little girl back. She can now hold up her head by herself, although she has lost fifty percent of movement in it.
After talking with the school we came up with a plan to ease her back in gently, so she’s going three mornings this week and if that goes ok she’ll do five mornings next week. When she is ready she will go back full time.
This morning was very emotional. She was really scared and cried so much. None of my children have ever cried to go to school, even when they first started, so it was also really difficult for me. She still went though. We met a little girl who remembered her in the playground and then her teacher and everyone was really nice. When I picked her up just before lunch she was a lot happier.
I had to take an obligatory back to school pic. It’s a shame I can’t do much with her hair but as it was mostly shaved it has grown back a bit weird.
A year ago I posted this, Star and the Broken Neck, at that time I had no idea what was going to happen to her.
Almost exactly a year later Star was taken to the theatre for the fifth time to have her second halo removed. It was an emotional day and we really had no idea what to expect. The last time she had the halo removed in March, My Angel Loses Her Halo, we noticed almost straight away that it hadn’t worked.
In June she had two operations, one a manipulation to straighten her neck, and the other was a seven hour operation to fix her spine together with pins, plates and bone graft, and we saw the return of the halo. An Update on Star
When Star came back from theatre she kept asking if the halo was off. I’m guessing it felt very strange for her. She had been fitted with a collar but the consultant had already told us it was only for her comfort. She only has to wear it when she’s feeling pain, or if we go out. She is due to have another CT scan in September along with a clinic visit and hopefully all will be well.
It feels strange looking at my little girl without a collar and with a straight neck, she looks so different, she looks so grown up.
It will take her some time to get used to using her neck properly again, and she will never regain full movement because she is pinned in place, but the big difference is she is now safe from danger.
It’s her birthday on Sunday and we are doing the same as last year, taking her to pizza hut with the whole family. Last year we were just starting out on this journey, now we are hoping it’s the beginning of the end. Of course we accept that she will never be ‘normal’ but just being out of danger and straight is enough. Maybe, in the future, there may be some way of her regaining some mobility in her neck.
|When she first came around and kept asking if the halo was gone|
|Enjoying a wrap, halo and collar free|
|back home with her siblings|