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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.

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caz198917 · 18/11/2022 08:20

QueenMabby · 17/11/2022 13:51

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.

Is what your daughter has called a Cavernoma?

QueenMabby · 18/11/2022 09:14

@caz198917 - a hamartoma as hers is a mix with cells/tissue too.

ThirdTimeIsTheCharm · 18/11/2022 18:00

As PP have said, there are several type of benign tumours that can grow in babies' brain. I want to add my anecdote. DS's best friend at primary school was a girl who had a brain tumour the size of a clementine removed when she was 9 months old. It was benign, but given the size, she had symptoms as a baby but you wouldn't tell at all as a 5 years old.

Yellowdahlia12 · 18/11/2022 18:08

I am so sorry to read this, you must be so terribly worried. If private treatment is an option, then go for it. It will be much quicker, if nothing else, and will reduce the time you have to be thinking about it. Sending virtual hugs and wishing for the best possible outcome. xx

EmilyGilmoresSass · 18/11/2022 20:47

Yellowdahlia12 · 18/11/2022 18:08

I am so sorry to read this, you must be so terribly worried. If private treatment is an option, then go for it. It will be much quicker, if nothing else, and will reduce the time you have to be thinking about it. Sending virtual hugs and wishing for the best possible outcome. xx

This. If your in-laws are happy to generously give for this (and this is obviously completely understandable and a wonderful gesture) then I'd accept. And trust me, I am not one to usually accept a penny from anyone. They will be as concerned as you, and won't have offered if they didn't care. I have had you in my thoughts all day. Take the offer, honestly. Your beautiful girl needs her mummy as much as you need her, so if you feel it will help you as much as her then it is worth it. I hope I'm not coming across as patronising as its far from what I intend. But do what you need to do, it's great you have such wonderful support from your in-laws x

slowquickstep · 18/11/2022 21:34

eastview Just thinking about you are you gorgeous baby.

uncomfortablydumb53 · 18/11/2022 22:07

Thinking of you and your beautiful DD. I'm sure every minute is passing so slowly, but once the MDT meeting is over, whatever the outcome her path will be clearer
Being in Limbo is agonising

eastview · 18/11/2022 22:18

I received a call from someone this evening (7PM) who said that they've provisionally reserved a room for her at Cardiff to have an MRI with contrast. We were just about to take her to a light show and I've been crying all night. Thinking that this is the last time we will be able to take her out. I'm so terrified and have no idea what to expect, how long we will be in hospital etc. I'm so scared that I'll lose my girl. I know we all jump to worst case scenario but I just know I can't live without her. I can't bare to see her in pain. I am absolutely dreading what to come. My heart is breaking. Some more cheerful photos of my girl today loving the lights. ❤️

Mass on brain 4 month old baby
Mass on brain 4 month old baby
OP posts:
ZandathePanda · 18/11/2022 22:30

Remember she has no idea about any of this so try and let that help you. Looks like she has had a great time tonight. With the contrast MRI I think they inject something into her veins that will show up on the mri. She won’t like the injection bit but it’s over quick. Dd has had it done and it was ok xxxx

Indoctro · 18/11/2022 22:39

Oh what a happy beautiful wee soul, she is gorgeous . Just try to get through each day the best you can, so sorry you are dealing with this. I hope you get answers soon x

BlackSwan · 19/11/2022 06:35

Don't think that way. One step at a time. Babies and children can be very resilient with treatment. It's terribly daunting for a parent especially when so much is unknown, but try to have hope. When my son was diagnosed I was in a terrible state of grief. My uncle, who had sadly lost his son tragically at a young age reminded me there was a lot the doctors could do & told me where there is life there is hope. Try to have hope. Sending love.

Christmaslover2022 · 19/11/2022 07:06

It's so sad that you have to go through this. It sounds like you've had a really tough time to have her. Your daughter is beautiful!
Do you need to go and see the gp and speak to someone, maybe consider some medication to get you through this? I know you're thinking the worst but if this turns out to be that, you are going to really need to take care of your mental health. I've worked on a children's oncology ward and the way you've been treated isn't how it should he dealt with at all, hopefully the next hospital will be much better. Write down every single phone call with a date and time, screenshot your call data, letters, appointments and keep it all incase further down the line you wish to make a complaint. This is not how you and your daughter should be treated. Keep going, you can get through this even though you feel that there's no way you can xx

cocktailclub · 19/11/2022 07:44

Try to keep faith. They don't know what the mass is yet. It could be non-cancerous.
The way you have been treated is appalling.
If you have the energy contact PALS in the hospital. They were great for me when I had a lack of information and coordination once and it prompted the teams to communicate much better. Or get in-laws to do this while you focus on enjoying your lovely baby.
Try to take one day at a time and don't jump ahead in your mind.
Sending you lots of positive thoughts

Justhereforaibu1 · 19/11/2022 07:53

She's beautiful OP. Sorry you are going through this, I hope she gets the care she deserves x

141mum · 19/11/2022 08:16

I know exactly what you going through, my dd had the same, thank god hers is non cancerous BUT the waiting is horrendous.
if you can go private to start with, results are same day, then you can go nhs.
my dd under kings college London, and now so far, 3 years, all but one time, I have managed to get mri in the morning and consultant in the afternoon
my heart goes out to you x

IneedanewTV · 19/11/2022 08:20

Stay strong. Good news re MRI. Thinking of you.

QueenMabby · 19/11/2022 08:51

Hi OP.
Good news re the MRI. My dd had her first one at 2yo and it went like this:

They give a (very light) general anaesthetic. The way it worked for my dd was that she was on my lap and then there was a little mask that I could just hold up to her face (not fastened on or anything). Dd then just drifted off to sleep and I could hand her over. All cannulas and other things happened once she was under so nothing hurt. MRI took about 45 mins. We went to the hospital cafe for a coffee. They came and got us once she was out but before she woke up so we were there when she came round. She had no clue.

It was all very calm. I confess I did cry once I'd handed her over and they'd taken her in to the mri but honestly she didn't know anything about what went on.

I hope this helps and do remember that whatever the news, not knowing is the worst. Once you know (whatever it is) you can have a plan for a way forward.

MichaelFabricantWig · 19/11/2022 08:52

Aw she’s just adorable and what a trendy little miss in her lovely outfits.

Glad someone has got in touch and you’re getting the MRI soon.

easy for me to say, I know it is, but try not to think too far ahead.

much love x

Somuchgoo · 19/11/2022 10:11

Glad she's got her scan. As had been mentioned, they'll likely give her a GA - you'd can be there when she goes to sleep. That's when you know yet goodbye and head off. They'll then put a cannula in so they can inject the dye, and do the scan. We've not been allowed to be there when they bring her round (I've asked repeatedly) but they get us as soon as she's awake.

ArabellaScott · 19/11/2022 10:14

Sweetheart, of course this is very stressful. Take it an hour at a time. Rest whenever you can. Drink plenty water. Try to be kind to yourself. Have you got decent support? Family about? Friends who can be there? There are plenty of us here if you need a place to vent.

eastview · 19/11/2022 11:45

Thank you for the advice everyone I really do appreciate everyone taking the time. What was everyone's experiences after the MRI? Were the results same day? Did you have to stay in the hospital and for how long? I have no clue what to expect tbh

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oakleaffy · 19/11/2022 11:55

Thinking of you and your dear Baby Girl.
She is the most precious thing in your Universe.
Best wishes to your little Family.

Somuchgoo · 19/11/2022 14:19

For us, the first scan (CT), was just precautionary as she'd been having headaches. We got the results in 20m, but it was 7cm big, so very very obvious, and they didn't have to analyse it that much.

Based on that, she had an MRI the next missing, to check there weren't any other bits
in her brain or spine, and to get a clearer picture for surgery, which happened immediately after (we knew this was their plan).

As we went straight into neurosurgery and there were complications, we were in for 7 weeks. But one of the others was only in for a week, and the average was 2ish weeks apparently.

For her monitoring scans (there's still some left), we are basically there for the day (8-12hrs), and get the results back in about a week. But as they giving detailed measurements of changes and they know what it is, there's less rush.

No one can predict sadly what will happen, and how long you'll be at the hospital. It could be hours, days, weeks, or rarely, months Regardless of what it is, they may need to operate, and this might be done almost immediately, or it may be a few days. If they operate, then recovery time varies hugely. It may be that either they don't need to operate or will do a different treatment instead, which may it may not be hospital based.

Many (hopefully most) hospitals with a children's neuro, have a Ronald McDonald House, for accommodation, cooking, laundry etc, but you'll also be able to stay on the ward, next to your baby. On the ward, they'll have a parents room where you can they microwave make, make tea and coffee etc. If you are breastfeeding, they'll feed you.

Neuro wards are scary, but bear in mind that every child is there for a different reason - I assumed they all had tumours etc, but we were actually in the minority.

I'd make sure to take a comfy sling with me, as if they operate, baby might be quite clingy for a while, and at least that way you can stretch your legs.

I'm really hoping that it turns out to be something easily fixable, and thinking of you all x

dontcallitsavvyb · 19/11/2022 20:40

eastview · 19/11/2022 11:45

Thank you for the advice everyone I really do appreciate everyone taking the time. What was everyone's experiences after the MRI? Were the results same day? Did you have to stay in the hospital and for how long? I have no clue what to expect tbh

OP, I’m not sure if you have said but when is the scan? Or have you had it?

The scan will be discussed at an MDT meeting attended by different members of the team to determine what they think is happening and if they want to biopsy, how feasible etc. As other people have said this is an important step as you need input from professionals with different skills. This isn’t NHS inefficiency and must happen to ensure the whole team is in agreement about the next steps.

The wait is agonising I know but I would expect you will have a clinic appointment about a week - 10 days after the scan. Do you know which consultant DD is registered under? If you can find out, and get the number of their secretary (through switchboard or online usually) so at least you can check when the results appointment is booked for. This is unless there is anything urgent on the scan, in which you will be contacted sooner. Wishing good news for you xxx

eastview · 19/11/2022 22:20

@Somuchgoo thanks so this! There is a Ronald mcdonald house there but I'm not sure we are eligible as we live 40 minutes away from Cardiff. I'm not leaving her tho I'll sleep in a chair for however long it takes. She's never been away from me and I know she will be so upset if I had to leave her and me too to be honest.

@dontcallitsavvyb her scan is on Monday I'm absolutely terrified especially as they're putting her to sleep!

Thank you everyone so much I appreciate everyone giving such detailed responses. My girl is currently awake laughing her head off and has no idea that any of this is happening. She's such a lovely kid. She rarely cries (never has) and just looks at everyone like they're just so amazing. This is another reason why I'm so terrified, I'm scared to see her in pain and upset because she never ever has been. She's a pleasure to be around always and I don't want her to lose that because that's just not her, she's so happy and funny. My heart is breaking just thinking about it

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