When Andy and his partner were given the devastating news that their son, Charlie, and his yet-to-be-born brother, Thomas, had a very rare genetic condition that would end their lives, they had to make some incredibly difficult decisions.

#IRemember, which takes place from 22 - 26 November, creates a space to share memories, like those that Andy and his partner hold dear, and to break the taboo around grief. Here, Andy writes about their precious final days with Charlie and Thomas. 

8th November 2019, Alderhey Paediatric Intensive Care Unit:

This was the day I received the devastating news that my beautiful little boy, Charlie, had an ultra-rare genetic condition called Spinal Muscular with Respiratory Distress Type One (SMARD1), which is usually fatal by two years old. The diagnosis was hideous, but to be told how it would progress was shocking. Charlie was ventilated with a tracheostomy and had respiratory failure.

This would mean ultimately, we’d have to decide when to withdraw his care.

Making an impossible decision

I made a heart-breaking decision during the meeting that if Charlie was to suffer a cardiac arrest, he was not to be resuscitated with drugs or compressions. I walked back into Charlie’s room on the intensive care unit and held him tight and apologised to him.

My partner was also four months pregnant and following amniocentesis complications and a diagnosis that Thomas had the same condition. We decided to compassionately terminate the pregnancy to save him suffering, and he was born sleeping on 28th November 2019. 

Watching my baby being born deceased was horrific. Holding him in our hands, giving him kisses and cuddles was all we could do, hoping that he knew how much he was loved. 

We laid Thomas to rest on 23rd December 2019, then had to go back into the paediatric intensive care unit with Charlie. We’d just had our baby’s funeral and knowing we’d also have to plan for Charlie’s funeral shortly, was just cruel.


Our final moments with Charlie

The next two months, knowing our time was very limited with Charlie, we made the most of the time left, with the excellent team at Alderhey & at Claire House Children’s Hospice. We made as many good memories as possible.

The psychological toll this was taking was enormous, but all that mattered was keeping strong and disciplined to monitor the situation and knowing to make the right decision to withdraw care was at the right time.

After 10 months in hospital, Charlie passed away in our arms on the 25th February 2020 at Claire House in a very controlled and comfortable way. Knowing that I had actually picked a date for Charlie to pass away was unimaginable, but for us to give him anything other than a peaceful death for me would have been unforgivable.

Lasting memories of Charlie and Thomas

I have been left with mental health issues as a result of these tragic events, but I know, that had I not faced up to the reality that my boys were going to die, I would not have been able to make the right decisions at the right time. This has allowed me to wake up each day and look at myself, knowing that we did everything for the boys and put them first. It went against every instinct as a parent, but death is a part of life and if we don’t talk about it, we can’t make it better for the next families who will suffer the death of a loved one.

Person holding a polaroid of two people smiling

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Share your memories on social media tagging @DyingMatters and using the hashtag #IRemember

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