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.

Hi.

First of all, I'm going to give you a big virtual hug. I've been there, and it is hell.

Secondly, it's hard not to, but try to keep some hope. Until you have a specific diagnosis, it's impossible to know what the future holds. Mass doesn't necessarily mean tumour, and tumour doesn't necessarily mean she'll die. I know it seems hopeless and you dare not hope, but the path ahead will become clearer in time, and it may not be as bad as you think. But the waiting is awful, I get that.

Thirdly, WTF are the hospital playing at. It might be they know something which means that don't need to rush her in, but they need to talk you through things properly and give you support. My 2yo had surgery on her brain tumour in under 24hrs from diagnosis, after being blue lighted from our local to the 'big: hospital. It might be due to the location it is in, and it's size (sounds huge but relatively little), posting little immediate risk, and features on the scan which make them think they don't need to rush her in. It might be they think it's something other than a tumour.

So how they are acting is alien to me, but I'm assuming there's reason behind it. This isn't really something you can go private on though. I'm not sure the facility exists in the UK for private pediatric neurosurgery (where treatment is needed, it's usually very prompt so no need, and a private hospital wouldn't have the facilities). You'd also be taking about hundreds of thousands of pounds I suspect.

Can you phone up your local hospital and ask to be talked through timescales etc, what exactly they've found, why is safe to leave it etc?

Would you be comfortable saying which hospital you'll be under? If not, that's fine.

Ps: we are now 10m into this journey. It's low grade, which is as good as you can get with brain tumors, but still terrifying.

Good luck

I’m so very sorry that you are going through such a horrendous ordeal . My son was very sick when he was a baby, it was a sudden thing and I remember the shock I felt to this day . Nobody can say anything to ease your fears. If your in laws are offering to pay for you to go private , I would thank them warmly and bite their hand off for the offer. Going private you will be seen quicker and be kept better informed by the medical
team treating your baby. That’s not me knocking the NHS, I think they do the best they can with the staff levels and workloads they have , but there’s only so much they can do.
Really hope you hear some good news very soon, as others have said , keep posting here if it helps . We’re all sending you lots of support and a hand hold xx

Oh OP. You poor poor thing.
And your poor little darling.

If you can, as a start, calmly and without getting angry send an email to PALS at your hospital: be very specific about what you want to know and timescales etc.

This is going to sound awful (I have a severely disabled child) when things got tough with hospital relations my DH would contact them. Some people respond to men differently to “the anxious mother” crap that hospitals sometimes presume.

I can’t believe how awful it’s been.

Are you in the Southern part of the UK?

I don’t know which hospitals, if any, do private children’s surgeries etc but I do believe that Great Ormond Street Hospital does. I only say that because I know that it was known for having international customers who could afford private care.

Please keep us updated if it helps. Hugs to you both

I had a similar (but different) health situation with dc at a similar age. Sent for cancer checks etc and referred to GOSH. I will never forget the deep fear. Words can't explain it. Sending love to you all and crossing everything for an outcome like we were relieved to have.

Take it one day, actually one hour at a time if need be. Enjoy your beautiful baby - as pps have said, she is still the gorgeous girl that she was before this test results - and look after each other.

xx

Thank you everyone. I have called multiple private hospitals today and none of them seem to have paediatric neurologists. There was 1 but he has a waiting list of 1 year. The hospital that we were in is the Grange University hospital in Cwmbran south wales and they are moving us to Cardiff university hospital which has some of the leading neurologists so I'm hoping that it will speed up from there but trying to get hold of anyone seems impossible. I'm very glad that we aren't being seen at the grange anymore. I had my daughter there and was treated terribly, now this on top is just making me hate the place so much. Plus one of the nurses squeezed too hard when taking my girls bloods and bruised the palms of her hands. This was noted that she was holding her too hard. I have left a voicemail with her consultant at the original hospital to call me as soon as possible because I want her details passed over ASAP. I shouldn't have to be chasing this as it could potentially be very serious. They just don't seem to care. Picture of my girls palms a few hours after taking her bloods. 

Honestly, as awful as it is, there must be a reason they aren't acting quickly, and rushing her in, and your best bet is probably trying to get to the bottom of that.

I'm not sure people who are suggesting going private realise the potential scale and cost.
I'm not saying what I'm about to say to scare the OP, but trying to be realistic about the private option.

If it is a tumor and it needs to come out, then you're looking at a hospital stay of 1.5w to much longer (just under 2 months for us). Probably part of that being in intensive care. There'd be at least 2 neurosurgeon's, anethetists (again plural), specialist neuro nurses (with high ratio's of care), physio, speech and language (necessary even with a baby as feeding/sucking/swallowing will need to be assessed). That's with zero complications.

GOSH could probably do it privately, but crikey, it'll be eye watering. If its necessary to save this baby's life, then absolutely, but finding out why they aren't rushing treatment may be a much better idea.

Her hands

Hi.

my son was diagnosed with a brain tumour at 14 months old. We’re just at the end of 18 months of chemotherapy. The bottom will drop out of your world and you’ll feel like you’ll never be happy again but I promise you will. It’s **ing hard. But you’ll do it for your baby.

Sending love

Thank you everyone. I am so very sorry to hear about everyone's circumstances too. I can't believe how common this is and you never think it's going to happen to you. I don't even want to look at her at the moment because I can't stop crying. I know she's going to pick up on it but I don't know how to stop I feel like someone's strangling me. I'm trying to get to the bottom of it but nobody seems to care

I am so sorry OP. I want to give you a virtual hug and handhold. I have been through something similar and still going through it so know how devastating such news is. I really hope things speed up massively x

I just wanted to say what a fabulous mum you are. You noticed her symptoms, knew something wasn't right and got her seen and you've clearly advocated for her and fought for her already.

OP, I heard of Dr Antonia Clarke through a poster on here. We saw her at New Malden Diagnostics, and I think she is also available at Harley Street. My DD didn't have a mass and it was a different situation, but the poster who recommended her spoke very highly of her treatment of their son who did have a brain tumour missed by other consultants. We saw her quite quickly and I would definitely explain the situation to her secretary.

I am so, so sorry that you are going through this and hope that you have more information and support very soon.

Couldn’t just scroll past your post. I am truly sorry to hear your news.
I hope that you get some answers soon as it is so unfair your having to chase to get any information.
My thoughts are with you and all the other parents finding themselves in this heartbreaking situation.
sending love/hugs and good wishes to you all. 💐

I’m so sorry that you’re going through this and can only imagine how the lack of information and poor communication is adding to your stress.

I have recently contacted the PALS team in the area that you’re being transferred to and found them very helpful and effective. The email address that I found from their website is [email protected] uk

i kept my message factual and made it clear what I was hoping they could help with me and they did. I hope if you make contact with them that they’ll be able to help you too xx

Sorry if you have already done this, but you can also search available consultants at GOSH on their private/international patients page:

www.gosh.ae/consultants

We paid for a private consultation for my daughter's rare conditions and were then referred straight back to GOSH on the NHS for her treatment and surgery.

It's ok to cry. There are no awards for being strong, and you will find a path through it. T h, you just need to endure it at the moment, and time will take care of itself.

Can you ask for a meeting up at your hospital with the dr, and take someone else with you, and asked to be taken through it all again.

It's a lot to take in at that original meeting, and having someone with you, to take notes and ask questions if you feel unable, would be helpful.

It may be that they'll reconsider how urgent it is, out it may be they will explain their reasoning in a way that reduces your panic.

Knowing that my toddler still has a tumour in her head, and getting on with my day, let her go to childcare etc, is really really hard. But it's manageable because I know why they aren't rushing back in to take it out, I know what the plan is, I understand the relative risks etc, because it's been discussed at length.

But it seems like they've given you this horrifying news and then just discharged you without any of that, without even knowing what they are dealing with. They need to have those conversations with you, multiple times if necessary.

Hi lovely, I’m so sorry for you and all you’ve gone through. We had a similar situation with my eldest, for us it turned out fine.

I wanted to suggest two things: ring your GP and see if they can at least talk you through any results they might have access to, what the process is from here, and they may be able to call your consultant and get more information.

failing that, if you can afford it, book an appointment with a private general paediatrician. They again might be able to talk you through any results and may be able to refer you on to a specialist. We saw DR Fysh at the Portland and he sent us directly for an ultrasound (30 min wait).

wishing you all the best, look after yourself xxx

Sending you so much love OP. I am so sorry you are going through this - she is still your beautiful little girl and you are doing a wonderful job - without you going to the GP, you would never have known. Please, please speak to PALS at the Grange - see if they can help push things forward for you x

Op, I don't have any advice but I just want to send in my love and positive thoughts. What an awful thing to go through and I can't begin to imagine the pain you must be feeling. I really hope it isn't anything like what you're thinking ❤️

Hello there, @eastview - we're so very sorry to hear this and can't imagine how worried you are right now.

We can see how distressed you are and wanted to flag up our Mental Health resources. You can also go to the Samaritans website or email them on [email protected]. Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek real-life help and support as well.

We also like to remind everyone that, although we're awed daily by the astonishing support our members give each other through life's trickier twists and turns, we'd always caution anyone never to give more of themselves to another poster, emotionally or financially, than they can afford to spare.

Wishing you and your DD all the best, OP, from all at MNHQ.

@eastview its every parents worst nightmare, but you’re going to need to dig deep, find your strength and fight for her to be seen and treated. Save your tears, don’t waste your energy crying. You’ve got this!

Just wanted to send a massive hug, I'm so sorry you and your family are going through this xox

I am so sorry to hear about your daughter. I am pleased you are being referred to a centre of excellence where your daughter will receive the best care, but sad that it is taking so long to get everything moving.

stay strong, you can do this.

So sorry, didn't want to read and run, hoping it all works out for you and your precious little one x