Get all your news in one place.
100's of premium titles.
One app.
Start reading
Chronicle Live
Chronicle Live
National
Chris Knight

Teenager with rare genetic condition died on Christmas Day after failed transplant

A teenager with a rare genetic condition died on Christmas Day after her body rejected a bone marrow transplant, an inquest heard.

Annesa Bibi was diagnosed with a C1q deficiency - a disorder which affects the immune system and can sometimes show symptoms of skin lesions and chronic infections.

The condition holds a 20% fatality rate in those diagnosed with the disorder before the age of 20.

Annesa first underwent a bone marrow transplant aged 15 at the Great North Children's Hospital in Newcastle in 2014. The procedure was initially considered a success and gave the teenager a "good quality" of life.

But Annesa's symptoms resurfaced, and she agreed to a second bone marrow transplant at the same hospital in November last year.

Complications developed from the procedure in the days and weeks following, and medics moved the teenager to the intensive care unit at the Royal Victoria Infirmary (RVI).

Annesa's condition continued to deteriorate, and her family were given the heartbreaking news their beloved daughter would not survive on Christmas Eve.

She died a day later aged 19.

Professor Andrew Gennery, honorary consultant in paediatric immunology and haematopoietic stem cell transplantation with Newcastle upon Tyne Hospitals NHS Foundation Trust, paid tribute to Annesa at her inquest on Tuesday morning.

He said: “Annesa was an amazing young lady, and a she had a huge impact on our team.

"We will always remember her sense of humour, infectious smile, and her laughter."

Newcastle Coroner's Court heard how Annesa, from Lancashire, was diagnosed with the rare genetic condition in 2011.

She was initially prescribed a course of immunosuppressant medication, and was also found to have vasculitis - an inflammation of her blood vessels.

The Great North Children's Hospital at the RVI in Newcastle (Newcastle Chronicle)

Annesa's mum donated bone marrow to her daughter for her first transplant at the Great North Children's Hospital.

Despite initially suffering with kidney and liver dysfunctions, Professor Gennery told the court Annesa recovered well from the procedure.

He said: "She was asymptomatic. She was leading a good life, she was at school part time and said she was feeling well."

However, the success from the transplant did not last long and Annesa's symptoms returned.

The teenager suffered a seizure episode in March 2017, and after discussion with medics “she was keen to proceed with an assessment” for a second transplant.

An anonymous bone marrow donor was found to be a perfect march, and Annesa was readmitted to the Great North Children's Hospital in November 2018 for her second transplant.

Professor Gennery said: "We didn't really want to use the mother again because she had rejected that, which happens for reasons that are not immediately clear.

"We found a perfect match from an unrelated donor, but Annesa didn't tolerate her second transplant as well as her first.

“The second transplant was complicated by a number of complications."

Annesa showed signs of altered behaviour, short-term memory loss and confusion in the days following the transplant.

Further complications arose as the teenager developed a fever and began to haemorrhage from her lungs.

Annesa intermittently required oxygen over the following weeks before developing an infection.

Medics in the Great North Children's Hospital decided to transfer the teenager to the intensive care unit in the RVI on December 18, but Annesa's health continued to decline.

Professor Gennery finished: “By December 24, it was clear to my colleague and the team that Annesa's condition was irretrievable, and further treatment was felt to be futile" 

The medical cause of Annesa's death was given as pneumonia which developed in her final days.

Coroner Karen Dilks recorded a narrative verdict attributing the teenager's death to "natural causes and complications from her treatment".

She finished: "Annesa suffered from a very rare genetic condition

“Without the C1q deficiency, Annesa would not have been in a position where a bone marrow transplant was required.

“There are well recognised complications with transplant procedures. Annesa suffered complications that are recognised complications, and that then triggered the final sequence of events."

Sign up to read this article
Read news from 100's of titles, curated specifically for you.
Already a member? Sign in here
Related Stories
Top stories on inkl right now
One subscription that gives you access to news from hundreds of sites
Already a member? Sign in here
Our Picks
Fourteen days free
Download the app
One app. One membership.
100+ trusted global sources.