The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

Working with the palliative team we achieved that, we worked on pain management regimens that would enable Daisy to get to school and do the things she enjoyed the most.  Every decision about Daisy's care and and procedures that were needed were all based on whether they would improve her quality of life.

Daisy defied the odds over and over and I found myself wondering at times if there were options to help extend her life.  We discussed the possibility of a stomach and intestinal transplant but decided not to continue pushing for a transplant assessment as the risk of her dying during the procedure were too high.  An American doctor came to review her and gave some feedback to her team which resulted in a decision being made on surgery to remove her colon.  We became excited at the research coming out of the US on a Costello Syndrome Mouse model.  But Daisy seemed to have a far more extreme form of the syndrome and ultimately nothing was going to reverse the mutation in her genes, she would always have Costello Syndrome however many new organs she received or new treatments were developed.

In some ways we were fortunate, we had time.  We had time to enjoy Daisy when she was still able to walk and was not always hooked up to machines.  Her decline was slow, painfully slow, but so obvious when we look back at videos and pictures we took over the years.  We had many conversations with the palliative team and hospice team about end of life.  We were very open to these conversations, we wanted to make sure we did the right thing for Daisy when her time came.

These very conversations made our conversations as a couple a lot easier when Andy was told he had terminal cancer.   When it was obvious he only had days left we moved heaven and earth and brought him home and he died, as he wanted, peacefully, with the maximum amount of pain relief provided by hospice at home nurses, in his own bed.

That was cancer.  It's a bit more predictable than a degenerative condition.  Or in Daisy's case a machine dependent degenerative condition with a high risk of sepsis.

In the end she went downhill very quickly.  Shockingly so.  It was as if she had chosen her time.  This time she did not bounce back.

A few years previously when Daisy had been hovering between life and death in septic shock I had conversations with our hospice at home nurse about how we would manage a situation where she had got to the point of no return and she would be dependent on life support to stay alive. That's where I learned about compassionate extubation.  I knew that if the option arose I would want Daisy to go back to the hospice that had become such an important part of our lives and for her ventilator to be switched off and the endo-tracheal tube removed.

6 months ago next week we reached that point.  Daisy's body was failing, she was not responding to the treatment for the sepsis that had overwhelmed her system.  Machines were keeping her alive.  There was nothing more that could be done, there was talk of dialysis, of continued resuscitations but all that would do would be to prolong the suffering.

I knew it was the end but I knew I had to get it right for Daisy, as we had for Andy.  I called our hospice nurse and said I wanted to do everything possible to try and have a compassionate extubation for Daisy at home.  I had promised I would take her home, it was what she wanted.

However in speaking to the intensive care and palliative care team I came to realise that moving Daisy at this point would cause her even more stress.  The last thing I wanted was for her to die in an ambulance in the middle of London.

So her life support was turned off in the intensive care ward.  The team offered me the chance to move her to a private room for her final moments but I did not want her disturbed any more.  We pulled the curtains around and let her go in peace.

The most important thing was that at that moment in time all that mattered was that she knew I was there and she knew she was loved and surrounded by love.  The location was not important.

As a parent it's the hardest thing I have ever have to do and it's also the most selfless. I wanted one last cuddle, one last chance but it was not fair and because her big brothers and sister and I loved her more than anything else in the world we let her go, surrounded by our love.

Later that day I got to take Daisy home.  Our wonderful hospice arranged for a cold mattress to be set up in Daisy's bed at home and we brought her back to her bedroom, surrounded by her toys and sat with her.  No machines, no one else in the house, just her family, as we always wanted.  She looked beautiful, at peace, a little girl, no longer a patient.

Many of us who have lost a child are reliving those moments as we read the papers and watch the news.  It's a club that you never ever want to join.

I just wanted to reach out to Charlie's parents and say that for me, at the end, all that mattered was love.  We were together and the time, the place, they did not matter, it was just that Daisy knew that we loved her and we had done our best for her.  She was and always will be loved, just as all the children who are gone too soon.

Sending my love to all my bereaved parent friends, stay strong xxx

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