Message about the treatment for Tafida

Introductory speech:  The article published here (underneath) is not any kind of news-story. Rather, it is a personal observation made by a confused mother about fighting to survive by her critically ailing child who suffered a series of cardiac arrests alongside other physical complicacies. Therefore, she would be held solely responsible for any credit or discredit of the article. Message about the treatment for Tafida  Tafida Raqeeb is a previously healthy 5 year old child who was an exceptionally bubbly, happy and friendly child who touched the hearts of whoever she met. She was kind, caring and always keen to help others. She was consistently chosen as a helping ‘hand’ monitor at school because of her caring and loving nature. Tafida enjoyed attending school, meeting new people, having stories read to her and role playing. Her favourite was being mummy to her friends and cousins.

In February 2019 Tafida (who was 4 years of age at the time) became unconscious due to traumatic brain injury. Barts Health NHS Trust said that she had a ruptured arteriovenous malformation (AVM) in her brain and suffered a respiratory and a cardiac arrest. AVM is a tangle of blood vessels with abnormal connections between arteries and veins. Tafida was taken for surgery almost 5 hours after the rupture.


On 9th February 2019 around 5:15am, Tafida woke up complaining of her head hurting in various places. Within five minutes she stopped breathing. I panicked and my 14 year old son gave her CPR while we waited for the paramedics to arrive. He was not able to revive her but my sister ran in about 5 minutes later and took over. At this point, Tafida let out a breath. Eventually, the paramedics came and intubated her in the house as she went into a cardiac arrest. Several paramedic teams came and took her to the local hospital where it was confirmed that a vessel in her brain had burst. We were told that they had liaised with the Neurosurgeon at Great Ormond Street Hospital who would be waiting for her in the theatre. We were not allowed to see her as they needed to quickly transport her to GOSH for surgery. I was informed that I would not see her before the surgery at GOSH either as they needed to take her straight into theatres and operate immediately. I was not even allowed to travel with her in the ambulance.

Soon after, we set off to GOSH. On arrival at the hospital, while the receptionist was trying to find out where my daughter was, I received a call from someone informing me that Tafida was diverted to Kings on route. I did not know who the caller was and she did not explain why there was a change. We rushed to King’s Hospital and arrived there at approximately 9.00am. We were met by the medical team who informed us that we cannot see her and that all her stats had dropped and that unless they pick up they will not be able to operate on her.

At approximately 10.00am, a neurosurgeon spoke to me and my husband, explaining that Tafida had suffered from an AVM rapture which rarely happens to children and that we have been very unfortunate. He said she will die if not operated on now and that he is taking her in with a 1% chance of survival and that she will most likely die on the table. He explained what it was and that it rarely happens to children and that we have been very unfortunate. We gave our consent for the operation.

The next 10 hours were agonising and the hardest hours in our life. We were in shock and still trying to figure out what had happened. At approximately 7:30pm a doctor spoke to us. He informed us that the surgery had gone well, however, the next 48 hours to one week is critical for her. Tafida was taken to Thomas Cook Intensive Care post operation. On the next day (Sunday 10th February), Tafida went into cardiac arrest four times and had to have CPR to be revived.

The next day, her stats were beginning to stabilise and we had some hope for recovery. However, we were unaware that the doctors were planning to do the brain stem test as they thought my daughter was brain dead. They wanted to withdraw intensive care support and wanted to legalise it by completing the brain stem test. One of the intensive care doctors even spoke to us about funeral arrangements, even though the test hadn’t yet been completed. They proceeded with the brain stem test on Thursday 14th February. We were all preparing for the worse. Following the brain stem testing, we were pleasantly surprised when they informed us that Tafida made gasping movements on the apnea testing. This was an indication that she wasn’t brain dead and therefore they cannot remove her from the ventilator. We sought advice from various independent neurosurgeons; one informed me that Tafida was in a coma. After a few weeks, a senior neurologist of the hospital assessed Tafida and informed us that he believes she is emerging from a deep coma.

Following the brain stem test, the medical team met with us many times in the first month and repeatedly suggested end of life as they believed that Tafida will not recover.

As we were firm in our decision that we did not want to switch off the ventilator, the doctors stopped talking to us about it for about two months. We started to notice Tafida make little progress, such as opening of eyes and movement of limbs. Her stats had also been stable for a long period of time. In April, we were transferred to Royal London Hospital with confirmation that Tafida will have a tracheostomy. We were even told that we may be able to go home after a few months and her recovery could continue at home.

After the transfer, a Paediatric Intensive Care consultant and Clinical Director in Paediatrics at the Royal London Hospital, Barts Health, met us and informed us that they will have to complete their own assessment and then put Tafida’s case forward to an ethical team who will decide whether to provide the tracheostomy or not. During their assessment, an MRI scan picked up fluid (hydrocephalus) in her brain, for which she was transferred back to King’s Hospital to have surgery to insert rickman reservoir which would help drain the fluid. Following the surgery, she was transferred back to Royal London Hospital.

At the end of April, a team of consultants met to assess Tafida and discuss her next steps. It was unanimously agreed to attempt to extubate her at least 4 or 5 times and to give her time to recover. They only managed to extubate her twice as she kept falling very unwell. The second time they extubated her was following a chest infection, in which case she was already very sick and not likely to manage without the ventilator.

In the weeks following this, Tafida was beginning to get more sick than usual. New scans showed that fluid had once again built up in her brain, meaning the reservoir surgery was not fully successful. She then underwent another surgery, this time having a VP shunt inserted.

Two weeks ago, on Wednesday 19th June 2019, I was informed by the nursing staff that two senior doctors were coming to the hospital to meet us in half an hour. At the meeting, One of the doctors  informed us that treatment will be withdrawn and if we don’t agree, the case will be taken to court to obtain an order to terminate her life.

On Monday 24th June, another specialist suddenly requested to meet us. At the meeting, she reinforced King’s decision on us about withdrawing the ventilator and discussed where we would like to end her life (home, hospice or hospital). On Thursday 27th June, she met us once again and told us that on Monday 1st July, she will be informing us of the date they have decided to switch the ventilator off which could be as soon as the next day. I requested for an additional week to enable her family to spend time with her, in particular her brother who was taking exams that week. But, the doctor did not take our appeal in consideration.
We have been researching various foreign treatments and have decided that we would like to take Tafida to Italy to continue the treatment. However, they have refused to release Tafida and are continuing to pursue end of life.

Tafida’s life saving surgery had been delayed for days as there was uncertainty of where to take her. Internal investigation is going on regarding this. Throughout the past 5 months, we have been repeatedly told Tafida was dying, however she continued to fight for her life. She survived the initial critical period, she then survived 3 surgeries and continues to fight. It is only fair that she is given a chance to make a recovery.