For reasons completely out of the control of his parents, little Charlie Gard is no longer able to be treated for his illness.
With this in mind, they have made the decision, now all avenues have been exhausted, to remove Charlie from his life support and let him pass away.
Their final wish is that they get to take him home, so he can be away from the machines and their infernal beeping.
I noted on Twitter, for those fortunate enough never to have had to transport a critically ill baby, that there are specialist teams that are specifically trained to transport sick babies.
Until I had my twins, I had no idea a service like that existed – so I noted its existence on Twitter to hopefully allay any concerns people may have.
I know that his ventilator is specialised and might not fit through the door of his parents’ home, but, I hope they can find one to accommodate their wish to bring him home.
As always with social media, there is always room for others to misinterpret what you say, but I hope people are smart enough to know I was providing information rather than an argument.
Even with my experience, I’m pretty certain Great Ormond Street Hospital don’t need some random like me telling them what their options are.
I do hope I put some minds at rest about the process of moving sick babies. He won’t be lobbed into the back of an ambulance with just his parents and a paramedic, there is a whole medical specialism in that area.
I remember watching my daughter being loaded into an ambulance at the entrance to the neonatal unit at Bradford Royal Infirmary. It was the only time she would ever see the light of day.
In the ambulance with her, was a registrar doctor and three neonatal specialist nurses – along with the paramedics.
It is a very, very specialised process and every single second of it is considered, planned and improved on before it goes into action.
The transport team are based at Leeds General Infirmary and go out in a highly equipped ambulance to all over the north, bringing critically ill babies to Leeds for treatment.
I felt terrified, following the ambulance, praying that she would get to Leeds for the heart surgery she needed.
Their professionalism gave me so much comfort and they really understood how scared we parents are.
If Charlie’s parents get their wish granted, it will be a highly trained group of medical professionals that will be transporting him, with specialist equipment and years of experience and training.
I hope that on its own gives some comfort or reassurance to anyone unfamiliar with how sick babies are moved.
Now, I feel like I’m back at square one, back to where I started blogging about this. Charlie has not long left in this world.
It was absolutely worth it – his parents fighting for the right to exhaust every possible route to saving their baby.
I would have done the same and they can honestly look themselves in the eye whenever they glance in the mirror and know that they can live with themselves because they did the best they could.
This is not the end of Charlie’s story. This is just the beginning.