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.

Omg @eastview I honestly don't know what to say to you but We're here for you to listen xx

My God, I'm so sorry. Have the indicated how long you will have to wait to hear? It's torture for you.

Here for a handhold as I can only begin to imagine the shock and fear you are experiencing, and it must be paralysing at this stage. How awful too that you were delivered this bombshell news without any kind of explanation or support from the diagnosing clinicians. I hope you are seeing them soon???

It will be pointless to tell you not to panic, but please hold onto the fact that the mass might be benign and / or treatable.

@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

How shattering, I’m so sorry you and your beautiful baby are having to face this x

Oh that’s such a shock for you. Do you have support around you?

Thank you @overthinkersanonnymus and @Puddlelane123 absolutely no support offered by the hospital and they even got her name wrong when giving us the news. I know the NHS is stretched but if they're not bothered about a tiny baby then the rest of us have no hope. They're so flippant too, drop that bomb then tell you to leave basically and now I have no point of contact as she's being moved to a different hospital

@Soontobe60 I do have a massive amount of support and my in-laws even offered to pay for her to be seen privately. But I'm not comforted by anything or anyone to be honest. I just want this to be a terrible nightmare that I'll wake up from

Oh what an awful worry. I would definitely go private and get her seen asap. Sending hugs

It might be worth exploring private options. At least you might get some answers and hopefully reassurance sooner x

This sounds like the most horrific thing to go through and I'm so sorry. It's a kind offer from your in laws to go privately. If you can focus on getting answers as soon as possible and then take things from there. The unknown is the worst and it's terribly unfair of the doctors to leave you in limbo. I truly hope your precious baby is okay.

How horrific, I’m so sorry. I would absolutely go private if you can. 10 days!! Like you can wait that long with this level of stress keep posting we are here to listen xx

The ‘aftercare’ (or lack thereof) you have experienced is absolutely shocking and utterly inexcusable. The only thing I will say, and I hope you take this in the spirit it is meant, is that the lack of immediacy / sense of urgency from the clinicans is hopefully a reassuring sign. I have known babies go from MRI scanner straight to ambulance and onto specialist neuro centres within a couple of hours, so the fact they aren’t rushing to do anything interventional hopefully bodes well.

Is your darling girl currently in hospital or was this done on an outpatient basis?

Every parent’s worse nightmare. So cruel to drop that news on you like that without further guidance. I would def go private if you can make it work at least for the diagnosis. Really hope all is ok for your lovely little girl.

Oh the waiting is absolute torture.

I've had a different but similar experience with my little one and it's so difficult to process the shock. As previous posters have said, it may not be the worst case scenario (ours wasn't).
The best advice I can offer is to remember that your DD is still the same wonderful little girl that she was last week. Try to enjoy her to distract you from the inevitable worrying.

If you are able to easily travel to the new hospital I'd also ask them to consider calling you if any cancellations come up. We were able to hugely cut the wait for one of our referrals by doing this.

Sending love and hugs and prayers for you and your little girl. You will get through this OP. 💕

@Puddlelane123 she was in hospital while having all of her scans etc then they let us go home on leave. She had her mri test done 10 days ago and it was only yesterday that I found out about the mass (nobody called me about it I was yet again chasing them up). They got a room ready for us as I thought we were staying for more tests but they basically said the same thing then sent us home. I don't know if or when they would have told me if I didn't call them myself. The lack of care has been appalling. The consultant told me yesterday that they weren't rushing because she hasn't collapsed on the floor and they'd prioritise someone who had. They sent us home because she's well in herself with absolutely no point of contact or realistic timescale. I am not one to complain but I feel like I need to to get anything done about this. The hospital they've referred her to is the best for neurology in the country so I'm hoping that when they get her info they'll be more on the ball. But I am making enquiries about going private if we need to as I am not waiting anymore than a few days it's torture

Oh love, you are going through a terrible time. Just wishing you and your little one the best.
If you can, get PALS involved or perhaps see if your GP can expedite care.
Thinking you and sending hugs 🌷🌷

That’s awful care. You must be ill with worry 💐 as PP said hopefully it’s a ‘good’ sign that they don’t think it’s anything immediately incredibly serious.

I previously worked in NHS and most of my family still do, in your situation if it was at all possible I would go private right now. I wouldn't wait.

OP I am so sorry to read your posts.
The shock must be overwhelming.
Nothing and no one is going to help until you know where you are.

The only thing you CAN do right now is enjoy this time with your baby, hold her hands and sing and go out for walks and look at the trees and the colour of the leaves. Fill the house with music instead of dread. Try and live hour by hour, day by day and don't allow yourself to think about tomorrow. All we have is today. That is all any of us have is the moment we are in right now talking to each other.

Run baths and cradle her in your arms, the warm water will relax your muscles and help soothe your nervous system. Try and eat, even it is soup. You are going to need to be strong, and not become weak and unable to stand. For her, to be able to properly support your dd in all of this you need to look after yourself, to be her advocate. She needs you to take care of you.

Counselling support, specialist support is there - please use it. It will help you get through this op.

Small steps op. Gentle as possible. Let others clean the house, do the food shopping and pay the bills. Get dh to make a list and leave it with the people around you. For now you simply need to get through the day, and you have now, you have today. Thats all you need to think about for now. Let everything else take care of itself.

sorry for your baby op. i hope everything will be alright, soon.
i read here somewhere that a referral from NHS to a private hospital can be done, too.

When you ring again and she is on the system, can you find out who she is under, get put through to the secretary. Then ask if you can email a message to consultant say “about her symptoms” if necessary/hesitation. Then write as succinctly as you can (not about the name being wrong etc) but when symptoms started, what you know and that whole family beside themselves/distressed that this is a brain tumour and that you need someone to speak to you about next steps as soon as possible.
Otherwise just think about the things you might need /miss if you do need a hospital admission and focus on those. NOT because she is not going to survive BUT because if you are busy/distracted you have more chance of mentally managing whatever lies ahead.

get her seen privately

I am so sorry, sending a hand hold and hug