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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.

OP posts:
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Unwaxedlemons · 21/11/2022 21:06

I hope everythinga has gone ok with the MRI today OP and you get some answers soon. Thinking of you and your beautiful daughter.

bewarethetides · 21/11/2022 21:09

Thinking of you and your beautiful girl today, OP. x

Mycatsgoldtooth · 21/11/2022 21:11

Sending prayers for you and your lovely girl 💐

tirednewmumm · 21/11/2022 21:11

Thinking of you and hoping you have good news soon

Brenna24 · 21/11/2022 21:16

She is utterly gorgeous. I hope that today went well and that you know soon.

marvellousmaple · 21/11/2022 21:27

She's so gorgeous. Everything crossed for good news OP.

VariantHela · 21/11/2022 21:27

Good luck OP
In tears at your posts because I'd die without my baby girl too (8 months) and she does look very much like your little sweetpea. Sending all my love xx

TeaPlzx · 21/11/2022 21:28

Every parents worst nightmare. Thinking of you OP and hope you receive the best possible outcome.

2018SoFarSoGreat · 21/11/2022 21:31

sending love to you and your beautiful girl, and crossing all the bits for a good outcome here.

Nonono11 · 21/11/2022 21:33

Thinking of you. What a happy, gorgeous little baby.

Callingallskeletons · 21/11/2022 21:34

Thinking of you OP and your beautiful little girl ❤️

StolenCookie · 21/11/2022 21:37

Please update us when you can. I’m in tears reading.

IsabelaYourBoyfriendsHere · 21/11/2022 21:44

She's an absolute darling OP, so much love to you and her and all your family. ❤️

WafflesOrIceCream · 21/11/2022 21:45

Sending you and your DD hugs.xx

ShinyHappyTits · 21/11/2022 21:46

Thinking of you and your gorgeous girl and hoping everything went well x

teachermummyme · 21/11/2022 21:50

Oh my gosh. I apologise for not reading the whole thread though I've tried to find your responses. I'm accruals in hospital myself, having had a brain tumour removed on Thursday. I also have a five year old and five week old baby so it's been hard.

I think if I've read right your darling daughter has had an MRI so you're awaiting results? This is shit. There's no getting around it. I think I can probably understand a bit of the terror you've been going through since that first scan. I'm so sorry you're going through it.

The only thing that has kept me going is trying (though utterly impossible often) is to focus on one thing at a time - might be one moment, one hour, one day, one scan. Things seem overwhelming, understandably, but our brains cannot cope with the future and it's terrifying what ifs rolling out in our minds. Try and narrow down and focus on each day, getting through each scary appointment. And remember, for every terrifying outcome there's a better possibility, too. There's nothing to say that one is more likely over the other, yet. And if it is something more sinister they've caught it early. I'm sure when I was first diagnosed they said 95% of tumours (if it is that) are benign.

I've found MRI results to vary in when they come, I think you asked that. Sometimes days, sometimes a week. I had one that was sadly inconclusive, hence having to have the tumour removed (I don't say this to scare you but so you know it's a possibility as I was blindsided by it).

Your daughter will be under the very best experts and receive amazing care. Yes, your future, like mine, isn't going to look as you'd envisaged in the coming weeks or months possibly, but you will get through this. Take strength, when you can, from the love and support of family and friends, as well as hundreds of strangers here.

Happy to answer any questions if I can, based on my experience.

teachermummyme · 21/11/2022 21:53

I also meant to say I hear you on lack of support and crap communication. It feels unbelievable when you're going through the worst time in your life; that it's seemingly so unimportant to them.

Look into the Brain Tumour Support Facebook group, if you feel it would help. I found it too scary at first but helpful now post surgery.

HugHeart · 21/11/2022 21:54

teachermummyme 💐💐 wishing you all the best for your recovery

Whalesong · 21/11/2022 21:58

I'm so, so sorry you're all having to go through this. I have no words, really. One of your pictures reminded me of the one we used as a Christmas card when our eldest (conceived by IVF after 5 years of various treatments) was a few months old.
I can only add my heartfelt wishes to everyone else's and hope that you get the best news possible under the circumstances, and that your daughter comes out on the other side still smiling so beautifully.

OldFan · 21/11/2022 22:00

Look into the Brain Tumour Support Facebook group, if you feel it would help. I found it too scary at first but helpful now post surgery.

Well God willing, OP's LO doesn't even have a brain tumour anyway, but something else less intense. x

teachermummyme · 21/11/2022 22:01

Yes absolutely @OldFan . I hope that more than anything.

Byelaws · 21/11/2022 22:02

Best wishes

teachermummyme · 21/11/2022 22:03

@HugHeart thank you - appreciate it! x

ipal · 21/11/2022 22:06

I am thinking about you and your sweet little baby girl xx

comfortablyfrumpy · 21/11/2022 22:11

I hope the MRI has gone well today.
Wishing you and your DD all the best xx