One heartbroken mum was told her daughter “didn’t look like she has sickle cell” shortly before the disease took her life.
Cecilia Shoetan, 76, a retired NHS midwife, lost her eldest daughter Lorraine back on September 15, 2000.
The 24-year-old had barely been in hospital 24 hours when she died from complications from Haemoglobin SC Disorder, the second most common form of the genetic sickle cell disease, and was just six weeks from her next birthday.
Sufferers of sickle cell, mainly people of African or Caribbean heritage, produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells, which can also block blood vessels.
Cecilia said: “When she took her last breath, I felt ‘how am I going to cope with this’. My first child, beautiful girl, walked with her into the hospital and went home without her.
"I felt so disgusted, ill, and guilty that I haven't been able to save my daughter's life.”
Damningly, Cecilia claimed that mismanagement of Lorraine’s crisis and the incident led to her condition worsening.
The week Lorraine died, she was battling a chest infection for three days before her mum took her to the A&E at the then Oldchurch Hospital (now Queen’s Hospital) in Romford.
She told EssexLive they had to wait around six hours to be seen by a doctor, despite informing them of her daughter’s disease and condition.
The heartbroken mum said: “If someone having a crisis, you need to assess them as soon as possible and put them on a drip to keep them hydrated. She was sitting there getting tired and feeling weak. I was telling them but they would not listen to me.”
When Lorraine was finally called to be assessed, Cecilia was left gobsmacked when the doctor said she didn’t look like she had sickle cell.
The mum continued: “She was born with it and it does not disappear just like that,” she said.
“I was worried. I told the doctors it was in her notes, but you can’t just judge her just by looking at her. So it did hurt me.”
Eight hours after arriving at hospital, Lorraine was transferred to a ward and given oxygen.
Cecilia considered taking her daughter to another hospital because of the long wait times but things took a turn for the worse when Lorraine collapsed in the bathroom, struggling to breathe.
When her mother screamed for help, Lorraine was allegedly brought an empty oxygen tank before being transported to another room for further treatment.
Here, Cecilia was taken outside initially before being let in.
But after being given Diamorphine, Lorraine suffered a cardiac arrest.
Despite being revived and put into ICU, her condition deteriorated and she developed a pulmonary embolism and Cecilia was told Lorraine would need to be transferred to the former London Chest Hospital in Bethnal Green.
But the transfer was “complete confusion” Cecilia said as the ambulance went to the wrong hospital initially, delaying the move and leading to another one being called.
Cecilia said: “Two, three hours have been wasted, putting Lorraine’s life in danger. It was horrific, it was a nightmare. We tried to live with it, especially me as a mother, I have tried to live with it. The way I looked at it, this is going to be the end of my daughter,”.
Once they arrived Lorraine was rushed into surgery to remove the blood clot, but she died on midnight of September 15.
Cecilia’s now set up Lorraine’s Sickle Cell And Thalassaemia Foundation and has been supporting families and individuals affected by the disease for the last 21 years.
A spokesperson for Barking, Havering and Redbridge University Hospitals NHS Trust said: “We are very sorry Cecilia and Lorraine had a poor experience at Oldchurch Hospital.
“We hope it is of some comfort to Cecilia that our care for sickle cell patients has vastly improved over the past 20 years. We have a dedicated team with both medical and nursing leads as well as specialist adult and children’s nurses.
“Patients and their families are further supported through nurse-led clinics, transition clinics to support patients moving from children to adult services, a parent support group, and awareness sessions.”
Tragically, Lorraine isn't the first person to die under such circumstances, Evan Nathan Smith, 21, died in April 2019 at North Middlesex Hospital in Edmonton, north London, after suffering from sepsis following a procedure to remove a gallbladder stent.
The football stats analyst from Walthamstow also suffered from sickle cell disease.
Oxygen is routinely used to treat low blood oxygen saturation but it was not forthcoming, MyLondon reported.
Barnet Coroner’s Court heard how he might have survived if he had been offered a blood transfusion sooner, but the haematology team were not informed he had been admitted.
Similarly, a soul singer with sickle cell was in so much pain that he "threw furniture" before dying after a morphine overdose due to neglect by hospital staff.
Tyrone Airey, who recorded under the name Tai Malone, had been rushed to the A&E at Northwick Park Hospital in Harrow on March 16, 2021, following a particularly bad sickle cell flare-up.
An inquest at Barnet Coroner's Court heard how nursing staff had insufficient training to manage and monitor Tyrone and his PCA pump - a device used to allow a person in pain to administer their own pain relief, My London reported.
The 46-year-old, who lived near Wembley Stadium, died from the toxic effects of a morphine overdose.
Lorraine Airey, his heartbroken mum, said: "This could have been avoided. He wouldn't have died if it wasn't for the morphine overdose which sent him into cardiac arrest.
"He was really up and coming and he was starting to become well known in his music career. This should never have happened."
