and that’s the last memory I have was no
time to get down to theater strong fighter
heart surgery paralyzed me age nine yes this is a true story this is all about
my spinal cord injury and why I use a wheelchair but start from the very
beginning so when I was born I was born on the 20th of November and everything
was okay I was born breech and my dear mummy had a very traumatic birth she did
it naturally so please give thumbs up to mother wheels I was born and everything
seemed to be okay I had a bit of a dropped foot which I talked about in my
limit difference awareness video and my wheelchair body confidence video so go
and check those out but my parents brought me home I think I was a little
pale I didn’t feed very well and I was a bit underweight and I cried a lot but no
one knew you know I kind of grew up as a toddler everything seemed to be okay
I don’t think my parents noticed anything different with me
then I started school and like five or five and at that time children when they
started school had to be visited by like a nurse or a doctor you go into the
medical room they check your eyes earring I think like your weight your
height your heart and everything like that and everyone had to do that I think
it was like a gun for mistake so I have my heart checked obviously and that is
when they discovered that there was something wrong with my heart
it wasn’t for the screening at my school then my heart problem would never have
been picked up which is why it’s quite important to have these medical
screenings which they don’t have any longer in school then I had to go to my
doctor and then I was transferred to the Brompton heart and lung Hospital up in
and that’s where I underwent like all of my tests they would do ultrasounds on me
like they would do it in my neck to live it down at my aorta I remember that
because it it used to kind of choke me and like make me gag and they do it for
limit hours they have this bloomin ultrasound proof in my neck and that
really used to give me and they’re in like under here and all that jazz I
think they would they would do ultrasounds for what seemed like at ages
ages ages anyway they discovered it and told my
parents that I had a coarctation of the aorta if you don’t know what that is
they otter is the main artery that pumps the blood to your body and the
coarctation was a narrowing now the narrowing in my aorta was so thin it was
like tissue paper and they said as she grows it’s inevitable that it will burst
so we need to cut it out and stick it to bit together again so he said um so when
I was six I went up to the Royal Brockton heart and lung hospital and I
had exploratory keyhole surgery now for some reason they went in my groin and
they went on the right side of my groin and they went up and must have stuck a
camera up into my heart to figure out what was going on and I guess to figure
out what kind of surgery was gonna take place so I had that I I actually quite
enjoyed it I think I had some time off school it was an adventure going up to
London I was in the hospital probably make a few friends always been quite
outgoing and inquisitive and got all this attention and new books and things
to do in the hospital and all that kind of stuff
so that was really exciting and I enjoyed it
I tell you think I’ve ever told anyone that but I did came back had this
massive bruise in my groin where they had
surgery it was as big as my hand I remember that because I was like
measuring the breeze with my hand and it kind of looked like a map of Europe with
all the different colors and everything like that
then I guess surgeons decide what they were gonna do and I had surgery the
major surgery when I was 9 I remember riding my bike home from my best friend
Lauren’s house I think and that’s the last memory I have I’m getting upset
that’s it that’s all I can remember the next memory I have I mean it’s all
blurred but I think I can remember intensive care and waking up so anyway
the day of my surgery came and we must have gone up to I think maybe the night
before and that was that and then I have the surgery and what they did was they
cut me open they cut me open here I did have pictures of them but I think
Instagram didn’t like them very much I’m not sure I’ve got a massive scar here
they came in through here and through the ribs and they cut out the narrowing
and stuck it together again and then they walk me round from the anesthetic
and this is all extremely painful so what I know is what I know my parents
know the finer details my mum’s written a diary I’ve tried to go there when a
newspaper contacted me wanted a story and try to sit down with
my mum but getting any new information like the smallest thing like even if my
mom said I went to a shop and bought this on that day and I remember this
like it seriously sets me back like even now it’s really hard so what I know is
what I know that’s what I can cope with and that’s all I want to know and I done
that I’ve come this far any in the morning they bought me round from the
anesthetic and I choked on the intubated breathing tube that was in my throat and
as I choked I panicked I don’t receive my blood pressure and my heart rate
released and the stitches burst so I had an aortic rupture the mortality rate for
that is about 90% so I was really lucky that one it happened first thing in the
morning and – I remember seeing my surgeon a few years ago and he’s like aw
yeah I remember you from all those years ago
and we grabbed dr. Lincoln out of his car and ran him up to intensive care
so it was just by chance that the surgeon was there a surgery had to take
place there and then there was no time to get down to theatre so they had to
close off intensive care and do the surgery and I I was without oxygen for I
heard it was like 9 minutes which is a really long time to be without oxygen
and I don’t think many people come back from that but they did start my heart my
heart stopped they started my heart and they stitched me up and I was on life
support and I always put into an induced coma
and my body temperature was dropped this was to try and get my body to recover
basically at that time they didn’t know what kind of state I was in and I think
my parents have kind of told to prepare for the weather then I think like over over the days
like I underwent a lot of tasks like the tests to check the if you’ve got brain
activity and every day I’d like give my mom a sign that I was alive and I was in
there because my strong fighter and my grandma who’s no longer with us she was
devastated obviously and she was like she’s a
fighter she can get through this I know her I knew she came to I know she gets
me and I did I don’t remember like but what I do remember
and like so you’re coming around I couldn’t see like everything was really
blurry that was probably because I hadn’t used my eyes so long and like all
of the drugs and probably the drugs I was really drugged up I couldn’t see I
couldn’t move my arms I can’t move my legs I think I could talk no one got in
the way of me talking and I kept on saying I thank you thing like knows I’ve
been using my name can someone get the bogeys I just wanted
to pick the bogeys out and it wasn’t till later on I realized I was told but
it was the breathing singing me Bob there goes in your nose but yeah I
remember that and then I was transferred to the ward
I kept wetting myself and pooping myself I was drugged up but I was a lot more
and I couldn’t move I’m sure this wasn’t supposed to happen this wasn’t supposed
to be this bad I’m sure they would have told me but my parents decided not to
tell me what had happened right away which was probably the right decision
and I don’t think anything of it really so that’s what happened and I remember
trying to stand and my right my right side was affected greatly than my left
side I remember trying to stand on my right foot and it felt like there was a
tennis ball under there and I just couldn’t stand and I can walk and didn’t
understand I remember there was this little girl in the hospital and she had
like a few days later she was up and walking about and I remember her mum
turning to me once at my wheelchair and that her mum
tend to me is it all leg Jim she’s walking isn’t that fantastic and I was
like yeah why don’t I so eventually I was allowed to go home my mum sort of
begged and pleaded to get me home as soon as I possibly can and my mum cared
for me and I had physio every day and at this time no one knew that I had a
spinal cord injury I believed that they thought that I had brain damage
that’s why I have the mobility issues coming home was really traumatic I
didn’t use a wheelchair at all I called around I wouldn’t have anything
to do with it shuffled upstairs function called
everywhere and it’s the bleep and I couldn’t sleep and I heard voices in my
head and I don’t know if anyone knows this either but I would hear voices in
my head at night and when you hear voices in your head it’s not like you’re
thinking voice you can actually hear people like in different corners of the
room and I would hear these people like all different kinds of voices saying you
will get better you will walk again and all of this kind of stuff and I was like
yeah yeah and I knew they weren’t real and when they would come over I’m not
gonna know it I’m not gonna nod because I know they’re not real but they would
talk to me like yes yes like they were real they were really real to me strange
drugs and I would cry myself to sleep horrible add a little commode next to my
bed glad to try and get on and off in the
night and I would listen to stories at night because I couldn’t sleep
that’s traumatized and drugged up and they really helped and then for the next
few years I had test after test after x-ray after MRI and I went to Great
Ormond Street a lot of tests up there went back to the heart place to check on
some right and then I don’t know how and I didn’t why they must have picked up
something that it could possibly be a spinal cord injury so then I was sent
down to Salisbury district district hospital whether it’s a spinal cord
injury unit and I went there and that is where dr. Truman his name was Sweetland
and diagnosed me with a t10 incomplete spinal cord injury is this due to the
lack of oxygen to the spinal cord during the surgery Angus how it came about and
how I thought with my injury I think I meant to add so it wasn’t until like
nine years ago I saw a doctor before head Daisy who assessed me and looking
at my co-optation he loosely diagnosed me with the cart with the vast inner EDS
and that’s all I know I know that I get chronic pain and I’m super bendy and I
pull muscles really easily and I get very fatigued and my muscles get very
pretty very easily but with regards to like any
ongoing care with that I haven’t that’s my story and how I suffered my spinal
cord injury in my next video I’m going to talk to you about like how I was told
how I took it and how I accepted it because I think that might that be
useful to you and if you’re struggling today and that video is not out then
I’ve got loads of video it’s showing what I do how I get out and how I have
managed to actually turn my life around and make it the best I possibly can so
go and check all of those videos out if you want some escapism tone watch my
Disney videos they make me smile subscribe for the next one and I’ll see
you later yeah

32 thoughts on “♿️OPEN HEART SURGERY LEFT ME PARALIZED AGE 9 | Spinal Cord Injury Story

  1. I wanted to make this video to explain the best I could as to why I use a wheelchair and how I suffered my spinal cord injury. I feel there are a few “newly injured” spinal cord injury story on youtube, but I wanted to make this video to show that SCI can happen at any age, and not all SCI are the result of an “accident.” Telling my story its always hard, and always emotional. Over time it has got a little easier, but the trauma is still there. 

    If you are coming to terms with a spinal cord injury, I have lots of videos that I think will help you. When I was injured 25 years ago I had no one, I was increadibly lonely, and completely lost. I think this is why it took me so long to come to terms with my disability. In my next video I’m going to be discussing how I was told I suffered a SCI, and my struggles at dealing with the life changing news. It’s not pretty, and it’s going to be hard. But if my story helps one person out there, I have done the right thing.

    Lots of love

  2. Hi Gem! Thank you for sharing your story, even when it was hard. I really appreciate you sharing your stories and shedding light on various disability and mobility issues. I actually also have EDS, which causes my joints to dislocate multiple times a day, and I use a wheelchair part time. It's really nice to have you to look up to!

  3. Thank you for sharing this. It is obviously a very painful thing to re-live. You are obviously a fighter and have chosen to fight not only for yourself but for so many others as well.

  4. Thank you for sharing your story. This had to be hard. Glad you survived all that. 9 minutes without oxygen wow. Strong fighter for sure.

  5. Thank you for sharing your story Gem, I think it could really help others who find themselves in a similar situation. Wishing you all the best, thanks for your informative videos!

  6. You've taken this straight up and made yourself a wonderful inspiring presence on YT and elsewhere. Honored to be a member of the Gem fan club ! ♥

  7. Thank you for sharing this. I had an operation go wrong and I've never met anyone who's been through anything similar. I'm so sorry you had to go through this, what I went through was very different but sharing your story helps me feel less alone. Thank you so much xxx

  8. Have you ever been checked for EDS? Your story reminds me of vEDS with all the tissue fragility; just a thought. Thanks for sharing your story! Your awesome, Gem!

    Edit: I clearly wrote this before I came to the end of the video when you mention vEDS haha!

  9. Thank you for sharing your journey. I’ve been watching your videos and remembered you talking about your heart and then your joints and wondered about vEDS or another genetic diagnosis that Coarctation of the Aorta. Has your daughter had a full cardiac work-up?

  10. I heard you explain this situation before and I still my heartaches for your childhood.im standing with you as you tell this horrific event. I wish I could hand you a tissue. Wasn't it weird though with them going thru your groin? When I had brain surgery they went through my groin to repair aneurysm in my brain. I was dumbfounded. But when they explained I guess it makes sense. The only other time they scared me so bad was when they did surgery to install a pump in my spine cord and they didn't know it was leaking. That is the worst pain I ever felt. It feels like your brain is going to explode. However, you have created a site were people can go and discuss things with others going through the same things. Thank you for that. Now, onwards and upwards folks.

  11. Hi Gem very courageous to share your story. I’m afraid I could only watch some of it because it was too painful for me. I’ve had traumatic surgeries resulting in my own sci and more recently, a major operation resulting in total intestinal failure for nearly 2 months and it brings it all back. I’m so glad you have come through the other side and are stronger because of your experience.

  12. Mine’s not really an injury or an accident. I was born with Spina Bifida. Mine is more like my spine didn’t fully develop.

  13. Awe thank you for sharing, I know that was hard. You are a beautiful woman and an inspiration and can I borrow some of that hair?
    Girl you have the most gorgeous hair which I’m sure you hear all of the time!
    What products do you use you should do a hair product video or maybe you already have?
    Have you done a video about how you met your husband?
    I would love to hear your love story video about your relationship and how you met etc. you have a beautiful family as well.
    I have watched your videos and I loved them I love Disney World so much, we went there on our honeymoon and stayed at the Polynesian this year will be our 25th wedding anniversary!
    So Disney has a special place in our hearts.
    I also loved watching your dancing adventures when you went to California just recently that was so amazing that you traveled alone, good for you!
    I really admire and look up to you.
    Hugs your way! ❤️

  14. You mentioning vEDS didn’t surprise me at all after having mentioned the tissue paper thin aorta. I remember you mentioning in the past about having EDS at least. Tissue fragility of major blood vessels is definitely more associated with vEDS than other types. But tbh, they should keep monitoring you annually so there’s no issues elsewhere, and preferably run a genetic panel too to see if you are genetically vEDS or another type

  15. Gem I have a very different story as my disability is different to yours but I see similarities too such as veins bleeding, being rushed back to operate, drugs making me not understand what was going on, not being able to remember everything, almost dying, crying myself to sleep, not being able to go straight back to school for a while after. My story was of having a brain tumour though. Thankfully I am still able to walk. Technology really has advanced now yet people are still not getting the best treatment. It’s interesting to hear your stories. Stay strong.

  16. Hi Gem, you are such an amazing and beautiful young lady i had tears in my eyes too I really admire you for sharing your story to me you have got a wonderful strong character and definitely won't let anyone or anything get you down you are a proper fighter
    Good on you girl definitely keep your spirits up and go conquer the world 👍 all the best Lin in South Wales uk 💞 🦋🐕

  17. @Wheelsnoheels thank you so much for sharing your story.

    And as for the one person who disliked this video, they can go suck a fart.

  18. Gem I teared up watching this! You have such a beautiful spirit and I have to say I am amazed at how you've persevered through this; it must have been so scary. You're a badass!

  19. This was a hard video to watch. I'm sure it was even harder to make. I'm so glad you came out on the other side and have come to terms with everything as best you can.

  20. Hi gem I am paraplegic patient and please do suggest me a name of your wheelchair since i started watching your video i begin my study and my journey again. You are my role model girl!!!! Do reply ❤

  21. I hear of so many in recent years not knowing they have heart issues till too late. I think all people need regular ecgs!!

    Some charities do screenings they need to be better promoted i think

  22. Sorry that you had to go through all of this must have been so scary. 😭😭

    I know it is scary but getting tested for vEDS could be beneficial just do doctors know you need extra support.

  23. Thank you so much for sharing such a personal story and one that’s clearly difficult to talk about. It shows the kind of gentle, caring soul you have that you hope to help others and I’m sure there will be many who find comfort and valuable insight after watching this 💗

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