Mass on brain 4 month old baby

[eastview]

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.

Sending you good luck and good wishes. Sincerely hope all went well. I cannot imagine what you’re going through.

sending thoughts and prayers to you and your beautiful smiley baby girl. Its only natural our minds immediately go to the worst possible scenario but have everything crossed for you thats its something much less scary x

She’s so gorgeous 😭🥹 I’m really praying it’s good (or at least, the best news possible) for you today/tomorrow/this week - whenever you get results xx

East view,

My niece had a similar diagnosis when she was 3 months old.

They found a tumour on her brain. She had seizures as a result for years.

It was awful, the most difficult thing that my entire family went through but we all survived and came out for the other side.

I just wanted to say that my niece is now a happy healthy 12 year old after she was referred to great Ormond street for surgery.

Try and get a referral to a specialist centre. We are in the north of Ireland and the initial prognosis for my niece was that there was nothing they could do. gOS told us that it was a routine operation for them.

Sending you a handhold and hopefully some Hope

I’m so sorry op. I know nothing will confort or take away any worry but I thought I’d let you know about my neighbours dc. She was around one and began walking strange, to the side as if drunk. MRIs shown tumour in the brain. They removed it and keep checking her every so often. It’s started growing again and they have said they will remove it again. I am really shocked but my neighbour seems to have been told by the consultant they are getting a few of these cases each week ! I pray for you and your dc xx

thinking of you and praying for a positive outcome
My own dd now 26 was seriously I'll and admitted to gt ormond street at age 4
I can remember buts of it like it was yesterday
we were told she would never recover but recover she did and is now a primary school teacher with a history degree not bad for someone who lost everything speech understanding etc had to re learn it all. Hopefully my story gives you hope. That feeling when your child is I'll is the worst
keeping everything crossed for youxxx

Small update;

First of all can I say I'm completely overwhelmed by everyone's comments. I've been reading them throughout the day and they've kept me going to be honest. Knowing so many people are wishing us well. Thank you for all of the positivity and offers of help along with other people sharing their stories and experiences. I'm so sorry for anyone that's been through something similar, it really has been so terrifying.

She had her MRI today and they put her under. She was surprisingly fine when she came around. She lost her voice a bit but sank a 6oz bottle, had a nap and woke up cheeky as ever. We just got let home now. They said they’ll review the results Friday and have the MDT meeting on Monday and meet with us on the 5th to discuss the plan going forward. They promised to call if there's anything urgent in the meantime. They said it’s not an emergency and they don’t think she has some aggressive form of cancer or anything like that. They said that they certainly won't be rushing to do any surgery that she may not need and want to make sure all of the right people have reviewed this going forward. I have a point of contact now too. That’s all I needed someone to say. Cardiff hospitals doctors actually give you a straight answers to your questions rather than "I don't know it's in someone else's hands now." It is frustrating to wait again but at least I know that the right people are now reviewing this and that we will get some answers soon. I am taking all of this as a positive at the moment

Brilliant OP - this does sound positive. Will be thinking of you this week.

That’s a good start op. So glad she is doing well and that you have some reassurance. One day at a time and hope the news gets better and better.

that sounds very reassuring. I hope you aren't panicking now and can enjoy your baby. Now that you are in a good hospital, they really can do incredible things to help and not everything needs surgery or big treatments.

And good luck with the results next week.

Oh bless you OP.
Thank you so much for taking the time to update.
I’m so pleased the consultants were straight and honest with you.
Sending you and your beautiful darling girl a virtual hug x

Thank God!!!!!! That sounds like the best news you could’ve expected today - I’m so relieved for you. It sounds like they’re confident she isn’t in any immediate danger which is fantastic. I hope you can breathe out slightly and get some sleep tonight you must be exhausted. Well done to your little girl for being such a star in hospital! Xxx

That's wonderful news, I'm so glad you're starting to get the answers you need.

Glad you are all home, and well done everyone for getting through such a difficult day. Glad your DD is feeling cheeky and well.

I’m glad you’ve got contacts now, and that you’ve been given an idea of when you’ll hear something. It sounds like it’s all well organised and communication is good. You deserve that, and I hope it continues.

Best wishes OP, to your beautiful girl and your family. You’ve all been in my thoughts today xxx

Ah reassuring news op. Have been thinking of you and your gorgeous little girl all day. Xx

Very happy to read your update and thank you for taking the time to let us know. It’s hopefully going to allow you to relax even just a little and I’ll be keeping everything crossed for the 5th for you. 💐

Thanks for the update OP. We are all rooting for you and your lovely girl. She is adorable. Really relieved to hear all went well, she is OK and its all looking positive. Come down to earth gently at home after all your stress, and treat yourself well, you deserve it. Am continuing the positive thoughts and prayers for you both. 💞

Thanks so much for the update; you must feel so much better. Keep us posted!

I am so glad that you had a better experience in the hospital and that they reassured you and said they don't believe it's aggressive. Your little girl is absolutely beautiful, I love her smile

Thank you for updating us. That is so kind of you.
You must be exhausted with that horrible fizzy head we get when we've been extra scared.
Try to sleep all of you 💐

Oh, that sounds reassuring, OP. Well done, you, you must be exhausted. Wishing you a lovely deep sleep tonight.

Great to hear you’ve had a bit of positive feedback from the Drs.

So glad to hear you're home with little one and she's doing ok after the anaesthetic. Got everything crossed for you for a positive result next week. Be kind to yourself in the meantime, you've been through a lot today 💐

We had similar life changing news when our DC was 4 months old. My world fell apart and I dont know how I got through the first few weeks and months. But I did and so will you because she is depending on you and you will never let her down. You will be amazed at how strong you can be. My best advice is take as much help and support as you are offered whenever its offered and whatever it is. It will lift your spirits and your energy levels. Keep a pad and paper with you at all times so you can note down any questions that you think of, any concerns that you have and make notes on any calls from the hospital, doctors etc. Its easy to get muddled with things at this time and again personally I found this really helped. We were initially told that the prognosis was very poor and I should give up work to be with her. It made every day, every experience a bonus which in itself is emotional and tiring. I wouldnt wish anyone to be in my shoes at that time but you will get through this.

Thank god! Well done for getting through the day 💟