«My daughter Indi Gregory had no chance in UK's diabolical system»

Update 3 p.m.

The Italian government, meeting in an urgent session at 2.15pm, has granted Italian citizenship to Indi Gregory. This enables the procedure leading to her transfer to the Bambin Gesù Hospital in Rome to commence. The hospital in Rome has already agreed to her admission. But, as soon as news broke, staff at the Queen's Medical Centre in Nottingham threatened to end Indi’s life-support in a move that would go against an agreed Care Plan. The family's lawyers are making an urgent application to the High Court to prevent this happening. The biggest obstacle, however, is obtaining the consent of the British government and the Nottingham Hospital where Indi is convalescent. We recall that in 2018 Italian citizenship was also granted to Alfie Evans, but the British authorities still did not accept his transfer to Italy.

The decision has, however, rekindled the hopes of Indi's parents, and her father Dean Gregory made this statement to the Daily Compass: “Italy gives us strength and courage to fight the injustice of which my beautiful little girl Indi is a victim. We are overwhelmed by the support from Italy and to have made Indi an Italian citizen moves me to tears. We love you Italy.”

“In court,  it felt like I had been dragged in to hell.” “There can’t be a hell without a heaven and I want Indi to go to heaven, that is why I had Indi baptised.” Mr Dean Gregory was at Indi’s bedside last Saturday evening when the Daily Compass contacted him by phone for this exclusive interview. Today, Monday 6 November at 2pm, the judicial stay preventing doctors removing her life sustaining treatment expires. And the last minute appeal to the ECHR that will be considered this morning holds little hope. After battling for weeks against doctors and lawyers in the courts, the Gregory family, if their appeal is rejected, will have exhausted every possible avenue to save Indi from death. It’s the same tragic script which has been played out multiple times. We recall a few of the high profile cases that caught the world’s attention: Charlie Gard, Alfie Evans, RS, Archie Battersbee, Sudiksha Thirumalesh. The scandalous repetition of so many end of life cases in the UK, “puts the country to shame”, said Mr Gregory.

Mr Gregory can you start by telling us about Indi?
India was born normally on February 24, 2023, even though we knew she had serious problems before her birth from the routine scans during the pregnancy. She had fluid on the brain and heart problems. For this reason, the doctors kept pressuring us have an abortion right up to the moment of her birth. We were warned that she might be born blue and unable to breathe after the birth, but she was fine at first. A few hours later, however, she did stop breathing and had to be reanimated and as she had problems swallowing her milk with a slight bowl malrotation, Indi was then transferred to this hospital: Queen’s Medical Centre, Nottingham. But things got worse and Indi began to have seizures which were difficult to control and sometimes prolonged. By the second month her doctors pushed to have her genetically tested. This is when we found out that Indi suffered from mitochondrial DNA depletion syndrome (MDS).

How did the doctors respond to the diagnosis?
When the result came back, I noticed a change of attitude. It seemed like the doctors had decided to give up on Indi. They began to advise us to look for a hospice. But, I pointed out that they hadn’t even tried to treat her yet. They replied there were no beds in intensive care and that she couldn’t be placed on the ward. In the end, she did receive some supportive treatment but I never felt they really committed to helping her. On one occasion, a doctor told us he would try an experiment on Indi by leaving her when she had a seizure for up to two and half hours. He wanted to do this for two to three days to see what would happen. I didn’t understand why. I even wondered if they were trying to cause brain damage which would be an excuse to end her life. At the same time, they continued to talk about transferring Indi to a hospice.

What happened next?
Indi continued to have crises and to be reanimated. But, these were caused by infections she picked up in the hospital. Last July, she developed sepsis from an e-coli infection. This was followed by a relatively good period. In mid-August she picked up another strain of e-coli. I think it could have been caused by the lack of hygiene in the hospital. In fact, other children in the unit had it as well.

When did the doctors start talking about ending her life-support treatment?
At the beginning of September we were called for an agenda meeting to discuss Indi’s future care. Basically, they wanted to inform us, there wouldn’t be any future treatment. The doctor told us they would put a DNR (Do Not Resuscitate order) on her medical records should she have another serious infection. I said I didn’t agree. We were told our unwillingness to cooperate could become a court case. They had no compassion.

Did you receive a court summons after that meeting?
No, we received nothing in writing. Then, a few weeks later, a doctor and a nurse called us into a room to say the Trust was taking us to court and it would be a final hearing. The nurse added that the court barrister had told her to tell us we were to keep the matter quiet and not to put the story put on social media. If we did, they would get reporting restrictions applied to silence us. I told them, “you’ve got no chance, this will go all over social media”. We only had 40 hours notice.

What happened in court?
The first hearing was adjourned because I had no legal representative. I was given a week to sort myself out. But, it was too soon, so I didn’t go to the second hearing. Therefore, it was adjourned as well. Charlie Gard’s mum helped me and pointed me towards Christian Concern. They took my case on, dealt with the press and my legal defence. I am really grateful to them.

Would you say you had a fair hearing?
No, it’s a one-sided system. The NHS, the lawyers, the doctors all back each other up, they behave like mates and even eat lunch together. The family doesn’t stand a chance and has no rights. I was shocked by the exaggerated testimonies the professionals gave in court trying to prove Indi is in terrible pain. One nurse described that she had seen Indi wince in pain when she gave her her medicine. One said she has coughing fits that last up to 10 minutes. It isn’t true, Claire and I spend up to ten hours everyday with Indi and stay the night as well if she is poorly. If I thought for a moment my daughter was in agony, I would stop her treatment, but she isn’t. The videos of Indi prove this.

Last week the Vatican paediatric hospital in Rome offered to treat Indi, with the Italian government’s assent, how did you feel when you received the news?
At first, it seemed surreal, it was such a beautiful offer. I was very emotional. I had lost all faith in humanity by the time I got that news. I couldn’t believe that Italy was willing to take a baby they didn’t know and who was not one of their citizens. It was overwhelming. The UK turned their back on Indi and Italy arrived to offer a helping hand. It restored my faith in humanity, but it made me feel embarrassed to be British.

What was the hospital’s reaction to Italy appearing to take your side?
They were very annoyed and made it clear they wouldn’t let her go. It seemed like their reputations were at stake and they couldn’t allow a precedent which might encourage others to follow suit so they had to punish us. They gave excuses like moving her was too dangerous. Apparently, moving indi just the short distance from the hospital to the hospice was problematic, therefore the long journey to Italy was out of the question for them. They said the cardiac surgery which had been recommended by other doctors, and which would have been done in Italy, was pointless. They said it was prolonging the inevitable because the illness cannot be cured. It’s true, I know there is no cure, I also know the illness can be managed as happens with diabetes or asthma for which there is no cure. But, if you kill all the patients with the illness, how will doctors ever find a cure?

Who organised the peaceful demonstration that was held outside the hospital yesterday?
Another mother whose child has mitochondrial disease and is being treated at the hospital. She wanted to draw public attention to the case. People are beginning to get worried this could happen to them. People need to be more passionate about human rights and ask if the State should be making decisions on who is allowed to live and who should die.

I saw you had Indi baptised in hospital, what prompted that decision?
I am not religious and I am not baptised. But when I was in court, it felt like I had been dragged to hell. I thought if hell exists then heaven must exist. It was like the devil was there. I thought if there’s a devil then God must exist. A Christian volunteer visited the intensive care unit everyday and she told me baptism protects you and opens the door to heaven. I was also really struck by my lawyers from the Christian Legal Centre, Louis Browne KC, Bruno Quintavalle and Pavel Stroilov, the way they supported me and their dedication. It was like Indi’s baptism was also a way of recognising their work. I have seen what hell is like and I want Indi to go to heaven. In fact, I have decided that me and my daughter should get baptised too. We want to be protected in this life and go to heaven.