Thread by @NHS

-With Parents Consent
This was the photo I was sent by Angelos Mum last night. In her words
“This is the most precious photo I have”
It shows their absolute bond as mother and son
Unfortunately, this would be her very last photo with her son, and the last time she would hold him

Why this thread is so important, not just for myself as their nurse, but for Angelos mum, is to shine a light on something very rare within neonatology.
Angelo, is one of the very few babies that was an organ donor
@NHSBT
Here is his story

Mum was at home, with her older child and her husband- she had had a really smooth pregnancy up until that day!
She unfortunately collapsed at home and became unwell herself.
She was rushed to her local hospital- but by this point, the family knew things were not good

Angelo was born, initially he seemed ok-but it was evident soon after that his condition was deteriorating rapidly
We got a phone call on my unit to say that they needed to transfer him to a more specialised centre because he was so unwell.
Mum was too unwell to transfer with him

Dad came with him, and was constantly trying to update Angelos mum in a different hospital
When we saw Angelo, we knew were were potentially going to loose him-a discussion no parent should ever have to endure
We stabilised him and worked hard to get his mum to the same hospital

Once mum was stable enough, she came to our hospital and saw him for the first time.
She had had a general anaesthetic to deliver him as quickly as possible, so the first time she laid eyes on him was over 24 hours since she had given birth.
She sat holding his hand, crying

We progressed with his treatment, but soon came to the realisation that Angelo wasn’t going to survive
Myself & the medical team sat with the family & explained what this meant-what options they had
Did they want to take him home and he pass away there?
A hospice
Here in hospital

It was so much information in such a short space of time for them
Then mum became ill, incredibly ill, so we put all plans on hold until she was better
A few days passed & mum was well enough to come to see us from CCU
She sat at his bedside holding him for the first time

She held his hand in hers, whilst what looked like hundreds of tubes and wires surrounded them both- all needed to keep Angelo alive.
She looked at me and said “it’s so unfair, he’s 7 days old and nobody knows him”
How do I go on without my baby

It was heartbreaking, and I sat and held on to her as she cried.
“I just wish he could live on some way”
Which got us both thinking... then, before I could say it mum turned to me and said
“Could we donate his organs”
A question I had never been faced with in #NICU

I am an adult nurse by back ground, and spent the first 3 years of my nurse life in Adult ICU where this conversation was had a lot.
But never in the 5 years (at the time) had I had this in NICU.
I went to the consultant and we spoke about it, we both didn’t know!

We started a conversation with the organ donation team-even they were unsure
Both of our teams worked hard to see if this was a potential so that we could give this family what they wanted
The Specialist Nurse or SNOD came to the unit and you could see, even they were overwhelmed

Many tests and conversations later- we were able to tell the family that this absolutely was an option for them!
You could instantly see what this meant to them both
“My baby is going to live on somehow”
I was asked to sit down with his big brother and explain

I felt this was an incredible responsibility and privilege to be asked by his parents to explain
We got a piece of cake each, and we went through it
He was the most incredible young man, and completely understood, and asked only one question
“Is it ok if I’m sad”
Of course it was

We put everything in place, we enabled the family to make beautiful memories, had incredibly beautiful photos taken (as above) gave him his first bath, before mum carried him to theatre where he was able to donate his organs.

Had mum never mentioned organ donation-we may never gotten to this point. We did and we gave the family the ending they wanted!
Even now,I keep in touch with this family- I see them at the remembrance services and they still find so much comfort in knowing part of Angelo lives on

Since then,my old unit incorporated organ donation as standard part of the end of life pathway for babies who meet the criteria-Angelo opened up the conversation we never had before him!
We are now bringing this to my current unit @boltonnhsft showing that Angelos legacy lives on

This family changed me as a nurse, they changed my way of thinking, they gave me a huge passion for end of life and palliative care in neonates- so much, that I am the Lead nurse for Palliative, end of life and bereavement care in my NICU now.
Angelo really is a shining star

This was #AngelosStory
One of heartbreak, courage and pushing of boundaries!
I still feel unbelievably privileged to have been a part of this courageous families story