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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.

OP posts:
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BaddogGooddoggy · 22/11/2022 08:22

Great update OP, thank you for letting us know. You must be delighted to be going home knowing that the matter is properly in hand xx

spiderlight · 22/11/2022 08:31

That sounds very reassuring. Glad she coped so well with the anaesthetic and that you've got a competent team now.

sotired2 · 22/11/2022 09:22

I have been in a similar position with my dc and you will need to get used to waiting. I know its hard but they will need all the information and relevant people to review and discuss potential options first. If they felt she needed admitting they would. Once they have a plan in place they will go through it with you and let you ask questions. Previous hospital probably couldn't as beyond their scope of what they deal with.

I know its hard but stay strong and try to remain positive.

FatEaredFuck · 22/11/2022 09:22

So relieved you have had a little bit of respect and honesty. You can rest now knowing they will call you if it was anything urgent and that in the MDT every single best mind will be on the case and collectively work out the best strategy for her.

She has coped amazingly - but so have you Flowers

In similar situations I've found it helpful to have set times a day I'm allowed to think/google/plan/worry. Ideally when baby is napping or being looked after by someone else. "I know I'm really stressed, but at 8pm I am going to sit down with a pen and paper and the computer and I have an hour to think and worry about it."

You could also set up a whatsapp group with just yourself (set up a group with one other person and then remove that person) and keep adding things to the list of things you'd like to research or ask a doctor the question of.

In the meantime could you get busy the next week getting ready for Christmas? Plan your foodshop, write your Christmas cards, use the Black Friday week to shop for family and friends and distract yourself. Keep busy and the week will fly by and soon you will be talking with doctors and understanding it all

Picoloangel · 22/11/2022 09:24

That’s great news. Honestly, being direct and helpful and having a designated point of contact goes a very long way. It’s very basic communication but most hospitals and GP surgeries seem too busy now to remember these things. Good luck next week. Your girl is beautiful 🤩

Violinist64 · 22/11/2022 10:33

Thank you for your update. I have said a few prayers for you and your beautiful little girl - and she is a truly beautiful baby. I am so glad that things look much better than they did last week - it is the not knowing that is so frightening, isn’t it? It is good that we staff at the hospital are so helpful, too.

Blossomtoes · 22/11/2022 10:51

Sounds like good news. I’m so pleased. Hoping for the very best on Monday.

teachermummyme · 22/11/2022 11:03

Well done OP - you have got through one of the hardest days you'll ever have to face.
It sounds like it went absolutely as best it could've done. They absolutely wouldn't have hesitated to rush her in if they'd thought there was something urgent or sinister. While I know it's torture waiting til the 5th, try and take comfort in that.
It's also enormously reassuring when you feel that you've got someone fighting your corner and a point of contact - it makes all the difference.

How do you feel? I hope you'll be able to try your best to 'park' any fears now until the 5th.

Pompomsfantastix · 22/11/2022 11:28

I have tears in my eyes reading your update OP! Was thinking of you lots yesterday. Your little girl looks and sounds soooo lovely and your love for her just shines through everything you write. I’m so relieved that it is not the worst news. You’ll both be in my thoughts xxx

uncomfortablydumb53 · 22/11/2022 12:04

I'm delighted to read of your positive update
Your DD is such a little star, taking the MRI in her stride, as are you.
You must feel overwhelmed with thoughts but when the MDT meet on Monday, I'm sure they will put the best treatment plan into place and you'll feel a tiny bit easier knowing the way ahead
Sending you and your beautiful DD Love and strength
My thoughts are very much still with you.

HiKelsey · 22/11/2022 12:10

eastview · 15/11/2022 11:13

@northernlola they have referred us to another hospital who I called this morning and said they don't even have her on the system yet. My hospital have been terrible and I'm just getting more and more angry. They said if I don't hear within 10 days to get back in touch. I can't wait 10 days. I can't believe they're dragging their feet like this. Currently looking into going private to speed things up. My girl is so happy and healthy other than this I just can't believe it. She's a dream come true and I couldn't go on if I lost her

Have you got a really good GP that could ring on your behalf and try amd get things moving quicker? The waiting won't be good for you or little one.

Sorry you're going through this, but once you have a answer you'd be a bit more prepared and be able to know what's coming next. Right now you're in a spiral of unknowns and it's really difficult to not worry.

Sending lots of love and hugs x

ParisHotel · 22/11/2022 12:14

HiKelsey · 22/11/2022 12:10

Have you got a really good GP that could ring on your behalf and try amd get things moving quicker? The waiting won't be good for you or little one.

Sorry you're going through this, but once you have a answer you'd be a bit more prepared and be able to know what's coming next. Right now you're in a spiral of unknowns and it's really difficult to not worry.

Sending lots of love and hugs x

Show quote history

Perhaps read the updates? The OP’s daughter has already had a scan and plan going forward from the new hospital. Also if someone has already seen someone in secondary care and referred direct to another secondary care hospital, unfortunately there is absolutely nothing the GP can do and isn’t involved in the process.

OP, that’s great that it all went well and hopefully you have a solid plan on the 5th. Go and see lots more lovely twinkly lights

TeaPlzx · 22/11/2022 12:52

OP, your most recent update sounds very reassuring. Simply having a contact and that line of communication sounds as though it's offered the tiniest bit of relief, in a time full of fear and worry. I'll be following for further updates and send all the positivity I can your way. Hoping for a wonderful outcome for you all. x

rainbowstardrops · 22/11/2022 13:03

Your update sounds as if everything went as well as it could do. Let's hope it stays that way! Flowers

PickyEaters · 22/11/2022 14:06

@ParisHotel no need to be snarky to someone who is just trying to help.
In fact GPs can often put a word in — mine has done so numerous times.

ImHavingAnOldFriendForDinner · 22/11/2022 14:21

Eastview that sounds really positive, everything crossed for good news on the 5th 🤞

Twospaniels · 22/11/2022 14:49

Your update sounds very reassuring. So glad the results seem good at the moment. You’re in the best hands and it sounds like they listened to you and are keeping you updated.
Best wishes to you all 💐

niugboo · 22/11/2022 17:10

@PickyEaters the other poster is correct. Once a person has been triaged and had tests there is nothing the Gp can do to speed up the process.

Excusemegreentea · 22/11/2022 17:52

It’s sounds very promising , I am so relieved to read your update. Be thinking and willing a positive outcome for you & your precious daughter on Monday. Sending strength.

elle6 · 22/11/2022 18:52

Beautiful little girl ♥️

I've got everything crossed for you all x

slowquickstep · 22/11/2022 18:54

Hope little Smiler is happy as ever today, it is tough for Mums to watch their little ones go through so much, hope you are resting today. Your update was promising, so fingers crossed.

tootiefruitie6 · 22/11/2022 19:05

Hi @eastview. I just read your story and just had to write as one mummy to another to say I'm thinking of you so much. Your girl is just beautiful. I am lucky enough to have two baby daughters after a lot of IVF but when my first was 7 months old nearly two years ago it was discovered she had cysts on her kidneys. I was absolutely beside myself with grief and anxiety convinced of the worst (and I don't think the hospital exactly handled it well scaring us and telling us not to Google etc). Anyway thankfully she is doing ok although she has a kidney condition which is regularly monitored and may (hopefully not) need a transplant down the line but apart from the hospital visits I sort of just learned over the following months to block it out and forget about it and just enjoy her and now her sister too. I desperately hope it is the same for you and that it is nothing serious and can just be monitored. Sending so much love xxx

neveradullmoment99 · 22/11/2022 20:37

Sounds positive OP. Hoping that everything works out for you and your baby.

Latetothetable · 22/11/2022 22:17

Everything crossed for you. You are being amazingly strong for your little girl

orangetriangle · 23/11/2022 01:45

that all sounds really positive wishing you all the luck in the world. She is absolutely beautifulxx