Terminally ill child

[Macey1988]

Hi,

So long story short my child has a terminal illness, I can’t really go in to detail as if I did then people would know who I am! His illness has caused his to go blind, paralysed and unable to swallow. My child had a Gastrostomy and cannot eat anything orally, my child has lost the ability to do all things he could before. His life consists of sleeping (sedation) and when he does wake he experienced coughing fits which he gets morphine and sedative for. This is my sons life day in day out, we know that my son can’t get any better and is not expected to live past 5. I cannot bear the suffering my child has went through and continues to go through, I wish I had an option to enable him to pass and not continue life like this. This is devastating and I’m just wondering I know euthanasia is not legal where I am (Scotland) but is there any other sort of plan for certain circumstances like mine, this life is cruel and uncomfortable for my son everyday it hurts so bad.

So sad. I'm sorry you're going through this and I can understand where you're coming from. I've always thought this disease is particularly cruel, if it's what I think it is. Hopefully your ds is in a hospice where his care will be of the highest standard. I wish there was something I could do to help. Look after yourself as well, OP. Make sure you are eating and sleeping well. Best wishes

I am so sorry you're experiencing this.

I've just watched my dad deteriorate with severe frailty over 18 months before he passed away...I can't even begin to imagine watching a child go through that.

There are no options in the UK unfortunately...my dad used to beg us to help him on his way and quite honestly if I'd though I could have gotten away with it I would have done.

Does your son have a DNAR in place?

Yes no son has a DNR and ACP on place. That’s the position we feel it’s awful and hurts your heart 💔 I can’t bear the thought that my son could suffer for another 3 years. Thank you for your advice and sorry about your dad life is so cruel at times. I lost my mum in a similar way to your dad and she didn’t want to live and would beg us to bring medication up and we just couldn’t do it but wish I could 😢

Yes my son*

Thank you for your kind words ❤️ Feel stuck in a horrible position and wish I lived in Belgium at this rate. 💔

So sorry, I have heard of another family who deliberately exposed their child to people they knew had flu in similar your circumstances (didn't work) but then covid hit and she died in the first wave. Far from ideal but then it's a terrible situation all around, as hard as it is to read about euthanasia in children, it does seem kinder than letting them suffer.

Not sure what else we can add here except when the time does come, someone is always on Mumsnet to offer comfort at 3am. Take care

I am so sorry you are in this position, do you have help from a children's hospice?

I'm so sorry. I've met a few children with what sounds like similar conditions to your DS. It is so hard and I am so sorry you're facing this.

This may be cemetery inappropriate to your circumstances but is there any treatment that can be withdrawn without causing more suffering. As far as I know withdrawl of treatment is allowed in some circumstances where assisted dying is not.

Oh my goodness that sould say completely not cemetery I'm so sorry about the typo

I’m very sorry you and your child are going through this.
It must pain you beyond relief to see your child suffering and for that I send you my love.
With the ACP in place I think should your child take unwell whether it be with infection or just a general deterioration I think you can say no to antibiotics or anything which may help and opt for palliative end of life care. I could be wrong but I’m sure you will appreciate quality over quantity of time in your sons case.
My heart goes out to you.
Do you have a good support network? Other family etc?

Thank you everyone for your kind comments, yes we are involved with Pallative care team, my son was rushed to hospital last week and had upper respiratory infection, he was coughing and gasping for air he got brought in ambulance and straight to resus room they gave anti biotics straight away and asked did we want him to go to icu. We said no, it’s in the care plan that if he needs to go to icu we come home instead and don’t want him going through any of that! Since then had care plan changed and Pallative care have made it clear that if we come to hospital we don’t want treatment just support. It’s so difficult witnessing him suffer every day. My other kids are heartbroken and having a hard time going through it too. I have a great family and lots of support around me, my family are all on the same page that life continuing for my son is prolonging his suffering. We are booked to go to hospice at end of July for first time and dr from hospice is coming to our home to meet us tomorrow. Hoping that we can get some more support as life is just so tough at the moment.

I hope the meeting with the hospice doctor goes well.
I think you are very brave, and it’s great that you have extended family support and that everyone is on the same page.
But you do need support too, it sounds as though you are being brave and strong for everyone as well as advocating for your son and that alone will be exhausting.
I hope the hospice offer you the support that you need as a family; including your other children. From what I have read they deal with this very well (the hospice staff I mean)
Mumsnet is also a great place to get things off your chest that you may not feel able to IRL.
Please also remember that you are incredibly brave and strong and it is ok to cry.

For families in similar circumstances I know the support from the children's hospice has been invaluable for the whole family. At this stage they really are the experts at easing the child's suffering and supporting parents and siblings.

I have nothing to add of use just that I'm extremely sorry for you and your son. I can't even begin to imagine. I hope he gets the peace he needs soon and you all have support to deal with this awful situation. So so sorry xxxxx