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.

Huge supportive hugs to you and your wee dolly. While you are waiting to be seen by specialists, I would ask for copies of all notes from GP (who should have notes from specialists as well as visits from you) and I would work with that rage you are feeling and start documenting everything you can remember regarding the eye rolling and what you were told (and by whom if you can.) I think you are going to probably want to contact PALS about all this. Reflux babies don’t roll their eyes. That’s just weird. You have been minimised and dismissed. Collecting blood from an infant is very difficult, but bruising her little hand like that IS not okay. (That’s what I do for a living.) Bruises at the site are often unavoidable, but from holding it? NO! I’m indignant on your behalf. I do very much hope you find better health care for your girl. Write everything down that you can. Also about her symptoms and when they began, etc. You might be too tired or overwhelmed when you are speaking to medical staff. Again, much empathy. X

Thank you so much to everyone who's sent a message. I contacted the concerns team who have gotten back to me today and are now looking into this. I haven't heard back from Cardiff although I called to chase yesterday I feel like I'm so stuck at the moment. Every now and then I feel normal then I'm just reminded about that's to come. A picture of my sweet girl from yesterday. She's not phased by any of this at all thank goodness.

Oh she’s gorgeous!!!! She won’t have a clue and use that to give ‘normality’. Well done for having the strength to chase. She has a fantastic mum. Xx

Sending you so much love @eastview - keep strong and sending so much positivity your way. She is absolutely beautiful xx

OP what a beautiful little girl🥰.

When my dd was born we were told that she had cysts on her brain but no further info. Our local hospital were useless. I complained to PALS but they were equally useless. I literally fell apart with worry.

We ended up taking her to privately see Mr Owase Jeelani who is/was a consultant at GOSH specialising in children's neurosurgery.

It wasn't cheap about £1k I think from memory for the brain scan and consultation.
I appreciate this might not be possible but thought I would give you the details in case it helps.

So sorry you are going through this OP. Your daughter is beautiful!!

i just wanted to say that we’ve been in and out of paediatrics at UHW in Cardiff for various things and they have always been fantastic. I am hopeful that once on there radar you will have a much better experience than you have had so far.

She's gorgeous OP❤️💐💐

My goodness! Wishing you all the best op.

The complaints team have called back and Cardiff now have the referral but they did say that the MDT don't meet until Monday so won't hear anything until earliest Tuesday. I really just do not understand how it can take this long with the possible risks. They've given me the nurses number to call but it just keeps ringing and ringing I feel like screaming at the top of my lungs

It can take this long if the possible risks are not immediate. Although I know this is scary.

She beautiful bless her hugs to both of you.

What a little sweetheart, she looks very like my own at a similar age. I've been thinking of you all day. Hope you get more information very soon x

She's lovely, OP. Hold on tight. x

I'm so sorry you're going through this @eastview. My only advice is to keep ringing and keep shouting loud. Squeaky wheel and all that. Thinking of you and your daughter.

She’s beautiful OP. Hope you hear something soon x

Oh she’s lovely OP x

The wait is horrible but it is important that the MDT meet and discuss your Dd's case before next steps are decided. She is so little and they really won't want to carry out any invasive investigations/treatment unnecessarily.

We went through this with our dd when she was 2. Her mass is an overgrowth of blood vessels that have effectively wound round themselves into a small lump. An operation wasn't necessary as the side effects from it (due to where it sits in her brain) could be treated. She's now 13. She has an mri every other year to keep an eye on it but otherwise it has no impact on her life (we are very thankful for this).

Obviously you don't know what is affecting your dd yet but there are many possibilities that are benign although our thoughts will always go to worst case scenario.

They are looking before operating rather than operating before looking which you should take as reassuring at this stage.

She’s a little sweetheart.

I agree with @QueenMabby. It is going to be a long weekend but you are now in the system.
You’ll stay in my thoughts 🌷🌷

I know every day seems like ages but the referral wasn't sent until Tuesday and they are meeting Monday, less than a week.

There is good practical advice here about getting a hospital bag together, I would add a water bottle, a power pack for charging your phone in case there's no plug, I had a travel folding toothbrush and toothpaste in my changing bag when we went through a series of seizures. Pen and paper can't be beaten though, write everything down.

If you need to come as far Bristol at any point, do pm me, I can provide hospitality or just an ear - I've been through scary times and was helped by other mums.

What a gorgeous little pumpkin. Please keep us updated.

They will look at her scans and decide what the next steps are and arrange to see you. It seems like a long time but it really isn't. The MDT will be specialists and will know what needs to be done. Try not to worry too much and do something lovely over the weekend x

She's a beautiful baby - cute outfit too!
You're doing all you can. You are beholden to the MDT timetable, I hope they get back to you very quickly after that. But in the meantime if you notice anything new/concerning then go straight to the hospital.
We had what felt at the time like a very long wait between my son's diagnosis and his surgery. It took two months and I felt like I might lose my mind with worry. It didn't help that it was in the middle of the summer so a lot of the consultants/surgeons were away... I felt a lot better having my son close to me in that time.

What a sweet baby 💕
Fingers so crossed for your Family.

I'm so so sorry that you and your daughter are going through such a terrifying time. You will be in the most horrific shock.

With my son I took him to A&E on Tuesday morning, he had a ct scan by lunch and we were blue lighted to another hospital in the afternoon. He then had surgery on Thursday morning.

I can only presume that what they have seen makes them think they can pull the team together and make a plan for treatment in a non emergency way which is preferable.

The worry for you is immense and the feeling of helplessness must be overwhelming. Don't be frightened to take your daughter back if her symptoms worsen. You are her advocate and know your daughter better than anyone. The Drs should be guided by you if there are any changes in your daughter.

I hope that they are able to treat your daughter quickly and smoothly.

Have a bag packed ready, have a notebook to write your questions in, note down what the Drs say. Take someone with you who can be another listening ear. Trying to process what they will be saying to you is very difficult when the fear is overwhelming.

I will be thinking of you and send you love and strength.

So sorry to hear this OP. I hope you have some answers soon. If things get too much please keep talking to us. There's a wealth of experience on here and lots of us have had similar experiences. All the best.