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 OP. I'm so sorry to hear the results of your baby's MRI.
My son had a brain tumour diagnosed at 3.5 (though he should have been diagnosed sooner, long story).
I know you must be so terrified right now.
Someone mentioned Dr Antonia Clarke further up the chain - she was the neurologist who finally got my son diagnosed, I think she's wonderful.
Do take a look at the resources and support available through the Brain Tumour Charity online.

Once my son was diagnosed (privately) it was made pretty clear that the best care for him would be in the NHS - we're in London, so that was Great Ormond Street. But if you have private cover & you want to speak with someone quickly the private route may be helpful too. Before my son had surgery we spoke to a few different neurosurgeons in the private system.

If you want to vent to someone in real life please feel free to PM me. I don't know much outside of my son's own type of tumour (craniopharyngioma) but don't feel you're alone.

The best advice I can give you is to take it one day at a time & don't be afraid to be your baby's advocate. If people are dragging their feet, call them on it. At the same time - not all tumours are alike: some are slow growing & it makes sense to have a multidisciplinary team (a group of neurosurgeons/opthalmologists/endocrinologists etc) at a hospital like GOSH to consider the best options/approach to surgery etc before leaping in.

Sending you strength.

The Brain Tumour Charity support

Practical stuff (to make you feel less hopeless) you can do if you are up to it:
Phone up the Epilepsy Society and tell them what’s happened (have it written down) - they may have some advice or can point you in the best direction for advice. Their hours are a bit sporadic but they are very approachable.

epilepsysociety.org.uk/what-we-do/contact-us

Get a suitcase ready with clothes and toiletries and a wired phone charger and headphones that plug into the phone (so they don’t interfere with equipment). And a notepad and pen. Then forget about the suitcase - knowing it’s ready if you did need it.
This is what we do (drs like to know):
Get a diary and write down what happens during a seizure and how long it lasts and if there’s any changes eg if it is affecting one side more than the other. Staying calm for your child is good (but I can’t say I always manage that).

We’ve got to know neurologists with our older child. They have said babies have an amazing ability to recover from brain problems as (paraphrasing) their brains can ‘arrange and rearrange’ connections so easily.

The ‘not knowing’ is horrendous and they should have told you more. The hand bruise is bad but try not to deflect your time and energy into that. Going to/phoning your GP as someone to help you and your baby get through this is good - despite moaning about long wait times etc normally, our GP has been excellent when stepping up is needed. Again write the main points down with dates/names etc. and write their responses down at the time (I forgot what people were saying).

In our part of the country there’s only one person who all the consultants like to refer to, to really scrutinise the mri brain scans and eeg readings (after initial looks by those less senior) so that might be the delay.

The higher up you go in specialists, the more forthright they can be to the point they seem uncaring but as long as they are good at diagnosing and surgery, I try to get less bothered now.

Also I recommend trying to have a moment to yourself and compartmentalise everything because you need moments of rest.

Hope some of this helps. Xxx

Oh OP, I'm so sorry to hear you've had this news

I'm another brain tumour mum offering you a hand hold. My boy was diagnosed at 5, although it's believed he'd probably had his tumour since a baby. He had chemo for a couple of years and is now a strapping nearly 14 year old.

Look after yourself. It's ok to cry, it's ok to feel angry xx

Thank you so much to everyone for your advice and well wishes. It's overwhelming the support that you've all offered. I'll definitely ring our GP tomorrow for some further support and also chase up her referral. I just keep looking at her and thinking that I just couldn't live without her now. I'll do anything and everything I can for her but being strong is so hard. She is laughing and smiling as usual and is totally oblivious to what's going on which kind of hurts me more. I'm terrified of next steps as I know it won't be pretty and they're going to inflict pain on her to make her better. I can't bare it and I just don't know how I'm going to make it through the next few weeks

I just wanted to send a massive hug. There is some wonderful advice on here.
My DC was also very poorly when a baby, different circumstances. Our local hospital were not great but once in the system they were in the wonderful care of Alder Hey. Sending love and as difficult as it is, please try and be kind to yourself

@eastview i’m glad to hear that you have a plan for tomorrow.

please take some of the advice above with a pinch of salt. @shabs05 may not know that health in Wales is a devolved matter. While the Welsh Government can only spend what Westminster allocates to Wales, MPs hold very little clout with this and contacting your AS (Aelod o’r senedd) would be more productive.

it’s also true that not all drs in the NHS work privately so if you can find out who your dd has been referred to you can research whether or not private is a feasible option for you.

please let us know how you get on. x

Another one sending you a massive hug. My daughter had a mass seen on an MRI head age 6 and I remember well the awfulness of the weekend in between being told there was something on the MRI and being told what it actually was and what needed to happen. Although she did end up having a cancer diagnosis that was one of the worst parts of the whole thing - not knowing exactly what’s going on is just horrible.
I would second others advising caution with going private - my daughter needed treatment which cost hundreds of thousands of pounds (though she is now off treatment and doing very well) and if it is something like that you’ll need the whole team approach that the nhs provides.
another option would be to make a list of questions eg what are the possible diagnoses, what would the possible treatment plans be, what’s going to happen next, why is it ok to wait this long and phone your consultants secretary and ask for the consultant to call you back and answer these questions.
Wishing you lots of luck and sending love.

@Muchtoomuchtodo
I'm sorry, you are right, I didn't know that.

I am so sorry to read this, I can only imagine the pain and worry you are going through.
I can’t offer any advice, but just send you positive thoughts and I hope for a positive outcome for your precious baby. 💐

What seizures did they say she was having? Was it infantile spasms? They can sometimes present like eye flickers and also need urgent management.

I’m really sorry.

Take your in laws up on their offer. She’s their grandchild and they love her and clearly want to help.

Actually I see others have given sound advice on nhs v private. Can you do both ie get the diagnosis via private means for your own sanity while you work your way through the nhs system?

I think push and pursue the referral to Cardiff. A small child will be prioritised with this clinical presentation but they need to get into the radar of the Paeds team. Think asking your GP to advocate is a great idea as they should hopefully been copied into the referral. If possible get details of the gen Paeds secretaries and call them to chase. I have had a situation recently where a terrible referral wasn’t picked up because the referrer had done a completely inadequate job in directing it to anyone in particular. Only because of parents chasing we actually learnt about the patient and from there things happened swiftly.

Please don’t start sending referrals to here, there and everywhere. It confuses the picture. Consider an initial private referral but in my experience we have had some antiquated approaches from private medics which wouldn’t have happened in the NHS.

I know the NHS is under considerable strain but once you get into an acute service often things can fall into line. Often, not always. You are your child’s greatest advocate and unfortunately the squeaky wheel gets the oil.

this is the worst part of the process. Al you have is fear, no answers. I am hoping you get some sort of plan soon xxx

Speak to your GP and get them to help and support you. When I had cancer my GP was very proactive in helping sort referrals out. I asked about going privately but she advised against that. She said that the best teams are in the NHS.

You can ask to be referred directly to Great Ormond Street.

I have just re read your post and realised that you received this news yesterday. I think the likelihood is that your referring hospital just don’t have the expertise to give you the information that you need at the moment, hence the delivery of the news hasn’t been done well. Going into a consultation with the family with a young child, delivering this news and having no answers is difficult to do. I would hold off pushing for a private referral considering that they only sent the referral to Cardiff yesterday. I initially thought it was longer. Every minute, hour, day is too long but you need to give the system some chance. There is a lot of NHS bashing going on but equally private doesn’t always have the most robust and peer reviewed processes. I would have faith in the NHS, but you can still take steps to pursue the referral. You are likely to have a little further wait until you get a complete diagnosis and a plan. My heart goes out to you but I see people tie themselves in knots trying to expedite things.

I am really sorry you are in this position. I suspect that a significant part of the delay up to this point is that there seems to be a scarily long backlog in MRI scans being reported, in many hospitals. And that dontcallit is right that the local hospital doesn't have the expertise to give you the answers you need and deserve. Do you have the name of the paediatric consultant you saw at your local hospital? If so, ring the hospital switchboard tomorrow (the number should be easily available by google) and ask to be put through to the secretary of that consultant. Then tell them that you are desperately worried, you don't know what's happening, and the other hospital says they don't have the urgent referral. Don't worry if you cry down the phone at her. She can then lean on the local consultant to make damn sure the referral has been sent, and the images transferred over. And identify to whom the referral has been sent, so you can contact them to offer to take any cancellation. I suspect you will then find that things start moving much more quickly.

I would also agree with one of the other posters above: a mass does not always mean a tumour, and a tumour does not always mean cancer. A thought to keep in your mind whilst you await review.

Thinking of you.

Oh, my dear. I'm so very sorry you're going through this. Sending you love and strength.

I’m so sorry OP to hear this is happening. Please call PALS and let them know the situation and how the hospital have been. I’ve experienced their ineptitude before 🙄 PALS in ABUHB are really good though and from experiences of friends and family they will act quickly to expedite this for you. Heath will be better though… GP’s in Torfaen are pretty useless though once a hospital has taken this on, you may get more sense out of a nurse prac! I hope to god your little one gets seen soon and you can get some answers.

Oh god, I'm so sorry this is happening. I would be furious too with the lack of care. Try to channel your anger into fighting for your daughter to be dealt with urgently, and yes, keep pursuing the private option. I really really hope it all works out okay. It's so so unfair.

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.

it is terrible what they did. i hope her beautiful hands will recover soon.

So sorry you are going through this traumatic experience.

I just wanted to say that it’s not necessarily the end of the world. Still have hope. My DH’s godmother was diagnosed with a pituitary gland tumour when she was 5 years old. She’s still going strong over 60 years later and still has the tumour. It hasn’t grown and hasn’t caused her any problems whatsoever in all those years.

My advice would be to wait and see how quickly things move over the next few days with the hospital transfer first before reaching out to private options.

Try to stay strong💐

@eastview What a horrible shock.
I absolutely get what you say about not wanting to carry on if anything happens to your daughter. The love one has for a child is beyond everything .
Hopefully it is treatable.
Take the generous offer of your In Laws and go privately if the neurologist is as good as the NHS one.
It’s a pretty pass when babies can’t be seen swiftly.
Fingers crossed for a positive outcome.

My niece had a 30cm tumour found at 6 months old. She had some treatment (I will find out what) and she is perfectly fine. She also had eye flickering but was healthy otherwise. Stay calm this come be completely treatable and just a bump in the road. I will get more information from my sister and post it x

3cm not 30