This week at the High Court, the parents of an ill baby girl have continued to resist attempts by the NHS to have her life-support removed.
Indi Gregory faces having life-saving treatment denied after doctors said it would be in her ‘best interests’ to die.
The seven-month-old girl is battling a rare mitochondrial disease.
Indi’s parents say that despite her disability, she is a happy baby who responds to their touch.
Indi is being treated in paediatric intensive care at the Queen’s Medical Centre in Nottingham, where her parents and elder sisters keep vigil.
Earlier this month, her mother Claire Staniforth and Dean Gregory, who are engaged, were devastated to be informed with only 48 hours’ notice that there would be a legal hearing to determine their baby daughter’s fate.
This week, Nottingham University Hospitals NHS Trust has told a judge at the High Court in London that it is in Indi’s ‘best interests’ not to be given treatment to ‘sustain her life’ in the event that her condition deteriorates.
A public ‘best interests’ hearing will now take place on Monday 9 October with evidence expected from doctors and Indi’s father, Dean Gregory, 37, from Ilkeston in Derbyshire.
The family are now being supported by the Christian Legal Centre.
‘She can definitely experience happiness’
Following the hearing, Dean Gregory, the father of Indi said:
“Indi has been in hospital all her young life, and she has had ups and downs, but during the good times she has been on a normal ward, able to breathe by herself and babble happily.
“She is not in pain and is clearly comforted by her mum and dad, because her heartrate is steady and calm when she is being cuddled in our arms.
“Our daughter responds to us, and on her good days she is babbling, making noises, moving all her limbs.
“She can definitely experience happiness. She cries like a normal baby. We know she is disabled, but you don’t just let disabled people die. We just want to give her a chance.
“We know she will never be the same as other children, because she has disabilities, but it breaks our hearts to think that doctors don’t want to give her that chance at life.
“It is completely untrue that Indi shows little awareness of the world and only shows distress. She only had setbacks because of infections.
“She is being discriminated against because she has mitochondrial disease. If a healthy child got an infection, they would be treated accordingly, but if Indi gets an infection, the doctors don’t seem to want to give her a fighting chance to get better.
“They are saying she should get palliative care only. She is disabled but that does not mean she does not have a good quality of life.
“For seven months, we have had the prospect of Indi’s death staring us in the face and we also have experienced a well-organised system pressurising us to yield and give up on Indi so that she dies. This has been the most acute experience of evil we had in our lives. It has been like experiencing hell.
“It is because of this that we decided to baptise Indi and we are praying for God to protect her.
“We were pressed to have an abortion by medical professionals many times in the lead up to Indi’s birth, and the pressure to arrange for her to die and after her birth has been a continuation of this.
“Taking a family to court at short notice in the middle of such a stressful and pressurised situation has been inhumane and wrong on so many levels.
“I will never forget as a father having to come urgently to London for the first time to defend my baby daughter. Such was the short notice that I didn’t have a lawyer and was up against NHS barristers. How can this be right for any father to go through?
“I and we as a family are prepared to do whatever it takes to fight for the life of our beautiful daughter, Indi. We call on the hospital and courts to respect and support our wishes and to work with us to find solutions to give Indi the best chance of life.”
‘Life is the most precious gift’
Andrea Williams, chief executive of the Christian Legal Centre, said: “Life is the most precious gift we have and in her first six-months of life Indi has shown no signs of wanting to give up on that gift.
“A truly compassionate society that cares for the most vulnerable in society just doesn’t do this.
“We recognise the courage shown by Dean to stand up in court without a lawyer and defend the life of his child with the weight of the system stacked against him. We are pleased now to be supporting the family who will do all they can to contend for her life.
“It feels intolerable that Dean and his family are in this position.
“Life is precious; we must give people every chance to live rather than prematurely write them off by saying it’s in their best interest to die.”
Find out more about Indi Gregory