Anyone else's child terminally ill?

[1980mamma]

Hi
My 6 month old beauty is terminally ill with SMA type 1. Anyone else out there trying to cope with this at the moment?
I posted a thread about SMA but no replies, but wondering if anyone out there facing losing their child?
We are trying and mostly succeeding to focus on the joy and beauty of our gorgeous baby. It's obviously devastating and terrifying at the same time.
Our baby boy was diagnosed at 3 months and is now tube fed. His care is extremely intensive. Luckily my husband is off work as its a 2 man job really.
I have noticed threads for bereaved parents but can't find any for parents with terminally ill children, unless I'm looking in wrong bit?
Thanks in advance

[Focusfocus]

I am so so sorry. No words are enough, I know. I don't know what to say to be of any help, someone will come along but you may consider posting it on a high traffic part of mumsnet, nobody will blame you. So very sorry, and tender hugs to your beautiful little one.

[1980mamma]

Aw how kind, thank you so much.

[SWFARMER]

Try and post in chat or aibu there's a lot of traffic on those threads. Ihope you can find someone in similar situation to support you x

[StayWithMe]

I'm dreadfully sorry for what your baby and your family is going through. I'm afraid I can't be of help but didn't want your post disappearing.

[Devilishpyjamas]

1980 - I know there are some on mumsnet (sometimes with life expectancies of years though). Hopefully someone will see this soon.

Do you know anyone in real life in the same situatuon? I have a severely disabled child & my friends who also have severely disabled children have been a godsend. It's so easy to feel isolated & so comforting to find out you're not the only one.

Wishing you all much love & strength.

[QuietIsland2]

Much love to you, your little boy and your family.

[groovejet]

Sorry 1980, I can't be of any help I just wanted to say how sorry I am, love and strength to you and your family x

[Gobbolinothewitchscat]

Oh my goodness. I'm so sad and sorry to read this.

I have nothing practical to add but just wanted to send much strength and courage to you all

[NewLife4Me]

I'm sorry I can't help either but wanted to say I'm sorry your family are having to cope with this.
Best wishes to you all

[D0G]

I'm so sorry to read this. I cannot possibly imagine the emotions you're going through. Words seem so useless. Sending you love and virtual hugs.

Near where I live there's a children's hospice, it isn't just for children who have reached the very end but families like you who have children with life limiting illnesss. They offer respite where the whole family can go and stay and I'm sure they offer a lot of support and advice. Is there anything like that in your area?

[Crownjewel]

Just wanted to echo what previous posters have said - sending thoughts of strength and peace to you and your DH, to your beautiful baby boy and to your family. xx

[1980mamma]

To say I am touched by these well wishes is an understatement, thank you so much. I'm brand new to Mumsnet and so it's all quite new to me.

@swfarmer what's aibu?
I'll try and work it out.

I'm guessing DH is partner? I literally have NO clue about the lingo :)

There is a children's hospice and an amazing one at that but this is our first baby so we don't really need or want respite. (Clingy parents ;)...)
Plus we are just happy in our little home/garden. I think there may come a time when we use hospice but we are quite keen for everything to be done at home where we all feel calmest. We have an amazing team supporting us though.

SMA support UK is the best organisation and I have a delightful peer support worker, couldn't ask for more. She is amazing and lost her baby years back.

I was just hoping to talk to someone who is currently in the same predicament, we'll see. I'll maybe try posting elsewhere.

So grateful for your kind words of comfort thank you

Xxxxx

[Ilikesweetpeas]

DH is darling husband, AIBU is am I being unreasonable

I work with terminally ill children in a school setting, so much older than your precious baby boy. All I would say about hospices is that they would have lovely facilities which your little one may gain pleasure from. Such as sensory rooms and a hydrotherapy pool. You may wish to think about accessing these facilities as a visitor with him, not leaving him in the care of others. I work with a family who do this, they remain with their child at all times but describe it as a pampering day out for the family. I wish you and your lovely boy all the best

[Kanga59]

Hi. My son has a metabolic disorder called PDH deficiency which is life limiting. It is a lonely path even for me who has loads of friends because they just don't get it. My son seems normal but he is severely delayed with his development. So although he is nearly two, he is more like a 9 month old. How are things going with your son? Is it a degenerative disease where he will be on a path for a while before dropping to a lower level if you know what I mean, and so forth? I have no idea what the future holds for my son because it's such a rare disorder and it affects everyone differently. We make memories and try and enjoy life normally and enjoy our son. I hope you do too X

[maybebabybee]

Bumping this for you OP

[YellowDinosaur]

So very sorry to hear this. I've come across another thread here with a mum going through the same with her little boy. I'm linking in case you'd like to be in touch x

www.mumsnet.com/Talk/life_limiting_illness/2452409-Spinal-muscular-atrophy?msgid=56510786#56510786

[JellyBaby26]

Hi my daughter has a life limiting condition, which they suspect is a metabolic disorder, she is undiagnosed and we are currently awaiting final appointments.

She was taken from me at 10 hours old and put on NICU for 2 weeks. They said when she was taken off her ventilator that she wouldn't survive but she has proved them wrong so far.

She is my first and is only 16 weeks old and its the worst thing ill ever have to go through. Its incredibly difficult having such a bleak future x

[Kanga59]

Hi jelly baby. I'm very sorry to hear this. Enjoy your baby as much as you can. Metabolic disorders affect sch child so differently, how is she doing generally?
Have you got in touch with the lily foundation? They are fab.
Msg me anytime x

[JellyBaby26]

Hi Kanga, she is doing fine generally, she is very behind development wise and doesn't have control of her limbs and eyes bless her and can't smile. but she's well in her self, she is gaining weight etc. her condition doesn't appear to have worsened but she is on medicines to control her seizures etc

Since posting we had an appointment with a mitochondrial specialist who is now only 55% its a mito disease as her respiratory chain test came back normal.

Feels like we have taken 2 steps forward and 3 back.

What signs did your lo show? do you have other dc's?

[Kanga59]

How did the consultant come up with his 55% number? Which hospital is he/she?

I would want a muscle biopsy and MRI. And the ketogenic diet can be very beneficial for some disorders and for seizure control so I would be looking into that too.

I have a healthy 4 year old too.

It is very 3 steps forward and 2 back with these fragile children.

My affected child had lactic acidosis at birth, little interest in feeding, failure to thrive, recurrent infections that he struuggled to fight off. At 20m now he has significant development delay.

Has you dd had any acute illnesses? These can cause stepwise deterioration so worth bearing that in mind.

X

[JellyBaby26]

I think it was an off the cuff remark as they were expecting abnormal results but everything is coming back normal. she is at the john radcliffe in oxford but also works with GOSH.

she had a biopsy and mri at 2 weeks old. mir report suggest respiratory chain disorder, and biopsy was normal apart from 2 differing sized of tissue which isn't screamingly obvious that its mito but points towards it, and you or i could have that.

No illnesses at all, its very frustrating. we want to know the other avenues they are exploring other than metabolic/mitochondrial but they aren't much help. we have seen so many people, its all very overwhelming and one person can't answer all our questions!

[JellyBaby26]

Forgot to ask which hospital you are under?

[SirVixofVixHall]

1980mamma, I am so sorry to hear what your family are going through. And the others here with children who have life limiting or severe illnesses. I have no experience of this personally but wanted to say how loved your baby sounds, and I hope you have as long as possible together.

[Kanga59]

We live in Oxfordshire. Our General paediatrician is at the JR. Our metabolic specialist at gosh. We have also seen prof Joanna Poulton at the JR at my request and she is a leading expert. try and get an appt with her. I have her secretary's contact details. feel free to pm me your email address if youd like to chat offline.

does she have high lactate?

my son has always done well, all things considered, a bit like your daughter. and it's been his blood results that have pointed to a problem.

are they still testing your daughters biopsy sample. was it skin or muscle

[JellyBaby26]

It was Prof Poulton we met with last week.

nothing was mentioned re lactate when she was in NICU and it was only last week it was mentioned, apparently she showed a slightly elevated level and they wanted to do a urine sample but haven't which has made me very cross that they mentioned it and haven't done it.

biopsy was skin and muscle.

w are meeting with a genetics councillor next friday to discuss what else it could be. we have a long list of questions we want answering, as part of me thinks something happened during pregnancy/birth.