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Original poster

Mass on brain 4 month old baby

937 replies

eastview · 15/11/2022 11:03

I don't even know where to start but I took my daughter (4 months) to the GP as she's done this flickering eye roll ever since she was born and they thought it was linked to reflux as did we but they referred us to a paediatrician just to be sure. They did an mri and eeg which showed seizures but found out yesterday that she has a 2cm mass on her brain. I am absolutely devastated and don't know where to go from here. They haven't given an indication as to what they think it is and we are just waiting to hear from them. All I'm thinking is the worst and I can't stop crying. I've been thinking about how I'm going to kill my self when my daughter dies. I feel hopeless and that I don't have the strength to do this. She is my only child and I tried for over 3 years to have her with miscarriages in between. They thought she was missing her cavum during pregnancy so that was traumatic too. I don't know what to do, I can't believe this is happening to us.

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ArabellaScott · 01/12/2022 13:51

Hoping you hear back from GOSH very soon, OP. It must be so hard with all this waiting.

EmGB87 · 01/12/2022 14:50

There are so many types of childrens tumours they want a second opinion as this determines the course of action and they want a second opinion to avoid a potential future surgery to get a biopsy. A lot can be tumour types can be identified on the scan. Our sons was a choice between 2 different types and they couldn’t decide which so he ended up having a biopsy in the end before treatment started. The waiting is horrid but important to get it right. I know it feels like you’ve been forgotten about but so much goes on behind the scenes.

PickyEaters · 01/12/2022 16:04

eastview · 01/12/2022 12:00

Thanks everyone. I am even more confused than I was before. I don't know wether to be more concerned or relieved because surely if it was obviously a brain tumour then Cardiff would have been able to see that? Or do they think it's something rare? Still no rush to get us in and the primary focus of the call was to check she was ok on her meds. Very confusing

There's no way to predict what they're thinking. Usually they would have to do a biopsy anyway to confirm if it's a brain tumour and particularly the type of tumour, so I don't think they will have sent it to GOSH for that reason.

Original poster
eastview · 01/12/2022 18:19

I've had a splitting headache since the phone call. But we had to get the Christmas pjs out today ❤️

Mass on brain 4 month old baby
Mass on brain 4 month old baby
OP posts:
Original poster
eastview · 01/12/2022 18:21

I'm really thankful for everyone's advice and I'm so sorry anyone's had to experience anything like this. You're all right, the wait is the worst part. But glad it's being reviewed by the top of the top. Thank you for all your well wishes and advice xx

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Jaybird43 · 01/12/2022 18:32

Oh she is a little darling! Thinking of you always, OP and praying for good news xx

ZeldaWillTellYourFortune · 01/12/2022 18:47

Adorable! She looks SO happy in all of her photos; you must be a wonderful mother.

Justhereforaibu1 · 01/12/2022 20:12

Thinking of you OP

Cuppsoupmonster · 01/12/2022 22:12

She’s absolutely scrumptious and looks so happy and alert! Thinking of you and hoping this will all be resolved very soon. Xx

uncomfortablydumb53 · 01/12/2022 22:42

Still thinking of you and your adorable DD

Fraaahnces · 02/12/2022 03:08

Definitely the Christmas Tree Fairy! What an absolute Dolly! Please be reassured by the inter-hospital conferencing. It’s much better than gung-ho doctors!

Flashingtealights · 02/12/2022 06:03

As others have said GOS really is one of the leading paediatric hospitals in the world. Hopefully you will hear back something very soon, the waiting is the worst as it takes your mind down every rabbit hole whilst waiting for that call .Sending love and positive thoughts to you and your baby girl . She’s absolutely adorable Xx

spiderlight · 02/12/2022 10:50

It sounds as if they're covering all their bases. Hopefully GOSH will get back to you quickly and you'll have a plan. She is honestly the most gorgeous, smiley little thing - I wonder what she'd think if she knew she had dozens of Mumsnet 'aunties' besotted with her?

MCbadgelore · 02/12/2022 11:19

We are extremely fortunate that despite the squeeze on the NHS our specialist paediatric hospitals are genuinely world class.

GOSH is amazing and the doctors there are plugged into a network of the top specialist doctors all over the world.

My daughter’s specialist consultant is at RMCH who are similarly excellent but occasionally my daughter’s blood has to go to GOSH (on the train, taken by a foot courier!) as they have the specialist labs/techs.

I realise it sounds scary when they say your local hospital doesn’t have the answers but I’d honestly rather have GOSH involved in your position.
Don’t panic too much (easier said than done, I know!) ‘rare’ doesn’t necessarily mean something will be difficult to live with/treat, it just means it’s not seen very often.

sending lots of love ❤️

MichaelFabricantWig · 02/12/2022 12:56

Aw she’s adorable 🥰 doesn’t she love the tree!

hope the review from GOSH brings reassurance

Always4Brenner · 02/12/2022 16:27

You won’t get better care than GOSH they really are the experts. Hugs lots 0f them and little angel looks adorable in the Christmas pyjamas.

Venetiaparties · 02/12/2022 17:27

Ah the Christmas photos are magical, you are in such safe hands now op and we are all behind you both.

welshpolarbear · 02/12/2022 17:48

Didn't want to read and run. Thinking of you and your gorgeous daughter. What a cutie.

I'm glad she's being taken care of now Flowers

Lingles · 02/12/2022 19:08

Mumsnet doesn’t do cute baby competitions. But if it did………

Sodonewiththisshit · 03/12/2022 16:14

Lingles · 02/12/2022 19:08

Mumsnet doesn’t do cute baby competitions. But if it did………

Probably the cutest baby in the world

pluckie · 04/12/2022 11:33

Just to say I'm still thinking of you and your little darling.

HotWashCycle · 05/12/2022 20:34

Still with you here, OP and your darling girl. Hope all is well today.💕

ChristmasChopin · 06/12/2022 07:06

Sending continued strength and good wishes to you and your daughter, OP x

LittleLottle · 06/12/2022 16:08

Your little girl is beautiful! Thinking of you both

Original poster
eastview · 08/12/2022 08:19

Just getting ready to go to her appointment not at 9.20. Didn't sleep a wink as in A&E with her last night. She had white stuff coming out of her nose and was just spacing out and screaming not sure if she was choking or having a different type of seizure but the hospital seemed to think she was ok. Eventually got in at 3am though. I am dreading today. It's been so long that I've partly pushed it to the back of my mind but now I feel physically sick...

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