Living with sickle cell anemia is not an easy thing. People who have it go through so much that most times, they are unable to express the pains they are going through. Most times, they carry on and perhaps tell close ones they are in pain, when in actual fact, the pain they are experiencing is agonising.
What is sickle cell anemia? According to Mayo Clinic, sickle cell anemia is an inherited red blood cell disorder in which there are not enough healthy red blood cells to carry oxygen through one’s body. Normally, the flexible round, red blood cells move easily through the blood vessels in sickle cell anemia. The red blood cells are shaped like sickles or a crescent moon.
Recently, the disappearance of Richard Okorogheye, was brought to our attention on social media and on TV. Okorogheye went missing on March 22 and his body was found in a forest outside London about two weeks later. We were told he had sickle cell. His body was found and the cause of death is yet unknown as further investigations are being carried out.
The week Okorogheye’s body was found, was when we heard of an inquest report, in the media about a young man Evan Smith, who died in 2019 and also had sickle cell. Smith had a sickle cell crisis and his case was unfortunate because he was admitted into hospital. But unfortunately, the medical team denied him oxygen when he requested it. The situation was so dire that Smith called the ambulance service from his hospital bed.
Prior to being admitted on this particular occasion, Smith had surgery a week earlier, where he developed sepsis. What is sepsis? According to the NHS website, sepsis is a life-threatening reaction to an infection. It happens when one’s immune system overreacts to an infection and starts to damage the body’s own tissues and organs. Sepsis is not contaminated. Sepsis is also sometimes called septicaemia or blood poisoning. Smith was eventually given oxygen and a blood transfusion but by then he was having a sickle cell crisis and unfortunately he suffered a series of cardiac arrests before he died the following day. The delay in giving Smith what he asked for did not help. A truly woeful and heart-breaking story.
Despite the fact that I did not know these two young men individually, I was really upset on hearing about their deaths. I was distressed because my heart kept saying these were young men, with their years ahead of them. I was distraught about the hospital’s neglect regarding Smith’s case. I was sad because I could relate to the pains that Smith and Okorogheye went through during their young lives because of sickle cell crises.
For everyone who had sickle cell, in the last year, due to the pandemic, we were all told ‘to shield,’ meaning not go out. This extended to, not see loved ones, friends and family members; this was a tough one. And it has taken the grace of God to not be messed up as regards one’s mental health. Shielding became the new buzz word during this pandemic: if one has sickle cell, one was identified as clinically extremely vulnerable to COVID-19. The government said such people are ‘at a very high risk of serious illness from coronavirus.’ We were told to not leave our homes and to minimise face-to-face contact. This is indeed tough for millions of people with one illness or the other.
These two young men suffered from sickle cell disorder, a condition which affects the red blood cell and common among ethnic minorities. Oxygen is routinely used to treat low-blood saturation. According to sickle cell disease news, sickle cell patients frequently experience hypoxia or low-oxygen levels, in tissues due to the reduced oxygen-carrying capacity of haemoglobin S. Hypoxia can lead to various complications in sickle cell patients.
Concerning Smith, I find it hard to believe that in the 21st century, there can still be a “lack of understanding of sickle cell disorder among the medical and nursing staff who looked after Evan Smith.” This was what the coroner said in the case of Smith. Smith died in a hospital in the middle of a large African and Caribbean community in London.
As someone with sickle cell, I find it unsatisfactory that any medical team or haematology team doesn’t know about sickle cell. Extra training needs to be given to medical staff, especially as this is a disease that affects the ethnic minority community. As someone who has been admitted into hospitals numerous times over the years, I have also had my share of near-death experience and it was horrible. At the end of my experience, I broke down and cried because I thought I could have died and that would have been it. I went alone to the hospital and it would have been what they said happened that would be heard, as I would have been ‘gone’ to state my case.
Some doctors and nurses can be indifferent and uncaring, even in the way they talk to their patients. Please note that I said ‘some’ not all. There are six types of sickle cell crises and so to tell a sickle cell patient for example ‘you should be used to the pain’ is uncalled for. I’m in my fifties and every time I am sick, the pain feels like something I have never had and therefore I cannot get used to any type of sickle cell crises. Whenever one has a full-blown crisis, it feels as if this is the first time. Mothers for example forget the pain of childbirth once the baby is out, until the next time and so it is with sickle cell pain. Except of course if one has a complication and there is continuous pain, day in day out.
I would like to offer my sympathy to the parents of Smith and Okorogheye; I want to also offer my sympathy to every parent who has lost a child to sickle cell. Even though we know we will all die one day, we are never prepared for death, most especially that of one’s child. My wish for all parents who have lost a child or children is that may God give you the courage to bear the irreplaceable loss as the recollections you hold dear grow into a treasure.
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