The story of Saarah
This video was taken on 28 of February 2021 just weeks before Saarah passed away. It was very a very difficult video because Saarah was deteriorating and no treatment was in place. NHS kept delaying the face-to-face appointment and telephone consultation was not good enough. Saarah waited over 18 months and no treatment for GI issues were sent. We received the appointment after she passed away on 19 April 2021. Saarah had the very rarest EDS and many healthcare professionals were not knowledgeable. Lockdown effected a lot . Saarah had many commodities developing one after another. Saarah suffered a bad scoliosis over 90% curved due to waiting and it was corrected on July 2014 with metal rod and screws. However, the procedure was not completed in one day and Saarah suffered and endured painful moments whilst the waste tubes were inside her body more than half metal rod screws were fitted within during the 7-8 hours long surgery. The full procedure was terminated and had to wait a day and the further procedure concluded which was another 5-6 hour long.
Saarah was 13-year-old then just 2 months from turning to 14. Before her spinal surgery Saarah was very scared, and did not talk about it and thought it will hurt us because we were a typical parent who thought of the Saarah to be a precious part of us.
On the other hand, she was afraid to opened up , not very much child counselling or psychologist availablity. l May be very upset and she just kept things within. 7 years ago, it was not like today where you can easily talk about mental health. So, in short, life with a scoliosis journey it was tough and to have 3 surgeries. As a child a 13-year-old in 2014 July Saarah had a high expectation to her physical outcome. Saarah thought that after having her scoliosis surgery she will be completely normal. It’s a bit like a ‘ Fairy-tale’ story, a 13-year-old at that time was in hope of having a normal life . Saarah asked me after her first surgery, “ mom will be able to walk like everyone else bring a normal person”. I was very upset and in tears to hear this and how she wished to have a normal life. Saarah did not know well about her condition and how it had affected her she was on early stage of discovering her condition. Whereas , very limited social sites and Information was limited not like today. In this day and age there is information everywhere in social media, Instagram, social awareness & Google .
During that time, we had very limited information on websites and it was more of patients self-exploration experiences. Family trying to find out how to support and reporting the problems during hospital visits so we then get help from occupational therapist and relevant authorities to held the required needs after waiting such a long time.
So In all respect Saarah was let down by her thoughts, understanding, emotions to come to terms with her life and that she will not have a normal life.
Soon after her surgeries within months , Saarah developed complications, her heart would start to race up and form felt more fatigue, fainting and the feeling of the syndrome was unpleasant. So when we use to report to the consultation about this , Saarah had tuned 14 and felt not listened to and consultation emphasising how fantastic the procedure is looking in the X-ray. Saarah was not getting any better, even 4 months after the surgery. She pushed herself to go in school for a short period but mostly needed to be in bed. It was constant pain even after the surgery. So a xray was taken after complaining. After that the X-ray report had shown there was a loose screw on L5 and hearing that had shattered us and we were feeling devastated to hear that there is a loose screw. It was the Surgeon consultant who had done the previous left a loose screw that had caused Saarah more pain than ever and having to take so much string medication like diclofenic, naproxen, and paracetamol. So the consultant said he will do a urgent surgery and on 2015 February Saarah had her 3 surgery. Shortly after that Saarah started to feel slightly better and went in school. She pushed herself to be see and feel life of trying to be normal. I was tough but I realised normal people do not try to fit in the world of hidden disability. It’s the other way the person effected try there best to be within the social norm. For about 16 months things were manageable it was hard having to get out of bed get ready and go to school. Suddenly Saarah got into makeup like typical teenagers. This meant she needed to wake up more early and get ready and do her makeup so she felt good. As a result Saarah missed her school work very much and less attendance. Most of her life was hospital appointments and surgery recovery. Despite all Saarah did her best shot to her GCSE exams and got of the most higher achievable grades 5* and 9 the new grades that came in place in U.K. in 2017.
Saarah was selected for 6 form as one of the highest academic student. Unfortunately sixth form had became very challenging due to ongoing health issues. Saarahs health started to go downhill again and she found getting to school was very hard to manage. She started from 3 A level subjects to 2 and still found going to school hard. Eventually in February 2018, Saarah left the school.
School life because a challenge and distracted by her heart racing fast and this developed after her spinal surgeries. It had taken years and specialist did not bother because they thought it was related to her chronic pain. It was just before Saarah died she was diagnosed with POTs March 2021.
Saarah started to develop lots of health complications such as cervical neck instability. The orthopaedic consultant had given false hope and kept wasting time delaying her neck issues. Saarahs neck started to bend. This is because she is already fused from bottom of her neck and during the time developed a kyphosis. The consultant delayed not knowing what to do, and Saarah was having neurological issues.
Slowly Saarah became bedboubd and life became like a danger due to developing commodities.
On 2020 Saarah entered a Miss Universe competition and she was selected as a finalist for 2020-2021. Saarah inspired the judge where she had travelled to LEEDs all the way from Carlisle over 200 miles away. So a person with EDS and having the rarer type was extremely painful, difficult to be able to travel all the way to be interviewed. Saarah said” if I was to be Miss Universe GB, I will raise awareness for hidden disability and use myself as an example “ the judge was in tears to hear her story and immediately got a place in the finalist. Unfortunately due to the lockdown the competition went remotely and Saarah didn’t want it to do it this way because she cannot show her full potential to awareness. So Saarah was entered for 2021. Unfortunately Saarah passed away before the competition but the dress she had ordered is still in the wardrobe and left us with heartaches.
During 2020 Saarah realised very few healthcare professionals knows much about the rare condition she has and that had inspired her to be a neuroscientist. She needed the A level grades and started to study from home with Eden tutoring. The performance of Saarahs work was outstanding because she was academically gifted. Saarah was awarded posthumously with 3 A* she needed. Unfortunately she is not there but hold her certificate as memory.
Moving onto the difficulties she had and spells at hospital was devastating. In terms of hidden disability we know that it’s inside more than externally. Saarah had limited mobility often judged by healthcare professionals and in public places. When using wheelchair often people use to be confused. It’s a hidden disability and people do not understand peers and school thinking it’s fake.
Healthcare professionals made their own assumptions during appointments and reviews and often judged Saarah because she had dressed up well and her make up was outstanding especially the way she use to do. She was an outstanding makeup artist. However, physicians, clinicians would make remarks saying it’s in her head and she needs to mobilise more and do exercise instead of listening to the patient and the problem. What they don’t see is beneath the iceberg 90%of the chronic pain. As a result to Ehlers Danlos Syndrome, this condition is disabling and it had slowly taken so much ftom Saarah. Saarah had dislocation every day. Getting in and out of bed, shower, toilet and brushing her teeth because very hard. Soon Saarah had challenges with her body. Her neck started to bend and orthopaedic surgeon has discharged her not knowing what to do. On a private base we had done our own research and it was diagnosed to cervical instability upon a upright MRI and the results had shown Atlantoxial instability. Chiari Malformation. Saarah also had mitral valve prolapse, POTs, Reynauld Syndrome, GI issues, colitis and eye issues, teeth issues, some teeth started to fall. Jaws dislocation- and locked. Soft velvety skin, 6 ft tall. Saarah was neglected since November 2019 when we went to A&E due to blood in the stool and diarrhoea. Saarah was admitted and kept for admission upto 6 days. Further to a CT scan it was suspected that it was colitis and was treated by antibiotics. We were told an outpatient appointment will be sent but it never did. We waited over 6 weeks and called GP for referral and the Lockdown started. We never heard anything back from gastroenterology team. Had 3 lots of gastroenterologists calling not knowing what to do passing her referral to other hospital. As a result, it was based on telephone consultation and Saarah was not seen by outpatient appointment. By now in November 2020 there had been no signs of appointment to be seen. By now Saarah was deteriorating and weaker due to loss of weight, lack of nutrients, flareups /abdominal pain, her knees & ankles were pushed swelling. When we went to A&E weeks before she died it was determined to her genetical condition EDS due to dislocation but they didn’t care to investigate the swelling.
Weeks before , this was reported to GP and a blood test was done after a few days it was revealed her bloods were abnormal. This makes sense ehh she couldn’t walk , swelling and the sudden deterioration.
Unfortunately following week Saarah turned yellow on the night 5 April 2021 next morning I called the GP and was told to go in to hospital. The 6 days from 6 of April 2021 were crucial there had been multiple bloods taken during each day bruised up and many pokes to find her veins. MRI scan was done CT scan ultrasound scan which, which should have have done before to investigate but couldn’t careless and delayed due to covid patients and lockdown restrictions.
We were shifted to Newcastle freeman hospital liver ward. Her tummy was swollen and within couple of days she died leaving us heartbroken. Her siblings were not allowed to be with her. I had no support only my husband. What we saw as parents in terms of medical procedures upon our princess ut was traumatising and shocking. It will stay forever as this was not how we wanted to see our Saarah leave . All in all family not being together is one of the hardest moments that will haunt us forever, In lockdown we were unable to be together and now it’s going to normality. Unfair. It was something we never dreamt or imagined our princess leaving us forever. It is unfair that nhs delays rare patients like Saarah. We need educated healthcare professionals more to save lives of rarer patients.
Saarah has taught us so much that will stay with us forever. She was our princess . My everything. Life without My Saarah us unbearable. She was only 20.