Doctors say I must let my baby die – I’m fighting for his life, says mum of five-month-old on ventilator
THE mother of a desperately ill baby boy is fighting to give him a chance at life after doctors told her they should let him die.
Little Ismaeel Islam was born with Down syndrome and suffered a severe brain injury at just five weeks old when his heart stopped, and his brain was starved of oxygen.
Since then he has been on a ventilator at the Royal London Hospital in east London and is unable to breathe without medical help.
An MRI scan revealed that the incident at five weeks had caused severe damage to his brain.
Doctors told his parents Sharmin Akther, 37, and Azharul Islam, 39, that there is only a slim chance of recovery.
Now just five months old, consultants now want to take him off the life-giving ventilator, which could lead to his death in only a few hours.
His mother Sharmin is determined to do everything she can do to keep him alive and told The Sun she will fight the hospital decision every step of the way.
Similar cases, including that of tragic Charlie Gard and Tafida Raqeeb, saw hospital trusts apply for court orders to challenge the family’s wishes.
Sharmin told The Sun: “Even if it is a slim chance that he could recover, I don’t want him to miss that slim chance. But taking him off the ventilator means he will die.
“He needs more time, a longer time to recover. I know it is not magic and it cannot happen straight away.
“We’re not expecting that he can just walk and talk like a normal baby. But he should have the right to live as well. It’s a human right to live.
“Me, as a mum, I will do everything to look after my child. I cannot let my child die just because there’s a chance of him having a disability.”
Sharmin spends every day with little Ismaeel and says he can open his eyes, and closes them when he is asleep, which is an improvement from when the injury first happened.
She said he can hear her voice and responds to her when she is near him.
His favourite cuddly toy is an octopus, which he hugs and grips with his hands.
Sharmin and her husband now want doctors to perform a tracheostomy, where a tube is inserted into his windpipe, for a different type of ventilator to be fitted.
That would allow him to be treated at home, Sharmin says, and have periods where he tries breathing on his own without the machine.
“I don’t want to go to court and have to fight this, but I will do whatever it takes to save his life,” Sharmin said.
“All I want is to save my baby, I don’t want to lose him.”
Ismaeel was born on September 28 of last year via caesarean section, weighing just 1lb 15oz.
Despite having Down syndrome and being premature, Sharmin said doctors told her he was healthy and an active baby.
He was taken to a neonatal intensive care unit and later transferred to a specialist unit, which is less intensive than the NICU.
That changed on November 3 when doctors called her at 11.45pm, to say Ismaeel had collapsed.
Sharmin and Azharul rushed to the hospital and found doctors surrounding Ismaeel, who was having seizures.
The family still does not know what caused the cardiac arrest and an investigation into it is ongoing in the hospital.
He was struggling to breathe and was intubated, with an MRI two days later showing his brain had been starved of oxygen.
In November and December Ismaeel was taken off the ventilator three times, and each time he was only able to breathe on his own for a few hours, before needing to be intubated again.
A second MRI was carried out on his brain which showed that the brain damage was worse than had previously been thought.
Ismaeel’s parents have been told that there was no prospect of recovery because he will never be able to breathe on his own.
At the end of December, they were informed that he would not be a suitable candidate for a tracheotomy.
In January they were told that he could be taken off the ventilator for good, which Sharmin says would mean he would die.
The hospital asked for a second opinion and doctors from Great Ormond Street Hospital agreed with the initial findings, that Ismaeel had no chance of recovery.
Since then, Sharmin has requested that the ethics committee of Royal London meet with them to find a solution.
She is set to have mediation meetings with the hospital, but knows she will never agree for him to be taken off the ventilator and left to die.
Sharmin has three older children who are 10, 12 and 16, meaning she cannot be at the hospital 24/7.
She said: “I have to come home, but my soul is connected to him. I cannot think of anything else but him. I love him so much. I don’t want him to die.
“When I went to see him in hospital when he was in special care [before the brain injury] I could grab him and take him out to give him cuddles.
“He used to enjoy cuddles. He knew that it was time for cuddling. He used to show that he wanted to get up.
“We couldn’t wait to bring him home and now I don’t know if that will happen. Every day is uncertain.”
A spokesperson for Barts Health NHS Trust said: “Our thoughts are with Ismaeel’s family during this incredibly difficult time.
“We will continue to provide the highest level of care and support for both Ismaeel and his loved ones as we work together to make decisions that are in his best interests.”
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