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.

OP I am so sorry to hear this. Going private sounds like a good way to speed this up but make sure to use one of the consultants at the hospital you have been referred to. I think once you are in things will move quicker.

I'm sorry you're going through this.

One thing that might help is to contact your GP to check if they have any letters or results from the hospital. If so, ask them what they say, and if you need clarification, ask them to check with the GP and get back to you, or book you in for a chat.

Explain the situation to them and see if the staff can find out what's going on with the referral. At our practice we'd be happy to chase this up for you.

I hope you get news about the referral soon.

I would also seek private treatment OP .

Im so sorry you’re going through this . I pray for your daughter and your family . Stay strong xx

I'm so sorry OP you must be shocked to the core
Waiting for results is agonising but once you know what the treatment plan is, the way ahead will be clear
I actually wouldn't seek a private appointment just yet but I would make a GP appointment to discuss as they will be able to access information on their system
I'm so sorry, they discharged you with no information that seems wrong.
Sending you love and strength

I'm a hospital manager. I'm so sorry you've been given this potentially very frightening finding without context or a plan. Go and see your gp today. If they don't answer the phone just turn up. I would not normally suggest that but this is your very young baby and you are clearly in huge mental distress. Your gp is your advocate in this situation. They can ring up doctor to doctor and learn more. They can also put stuff in context. That she is doing well otherwise is good news, hang on to that abd push for your gp to advocate for you both. And tell your gp you feel you can't go on without her. They need to know that so they can help you both.

Excellent calm advice from @Northernlurker above

Help for you and your baby

Not all consultants practise privately in hospitals. Sometimes they have other clinics. When you know who your baby has been referred to, you can ask their NHS secretary if they have a private practice.

Have you found these numbers
cavuhb.nhs.wales/our-services/neurosurgery/paediatric-neurosurgery/

So sorry you and your family are having to go through this. Please go private if you can. x

Go private OP, the care you'll receive is worlds away from anything the NHs can provide. The difference is honestly shocking.

So sorry to hear what you and your little one are going through.

News report on the hospital just today: www.southwalesargus.co.uk/news/23124526.mp-renews-calls-inquiry-grange-hospital-inspection/

I'm so sorry that you are having to go through this.

I think sometimes clinicians deal with these things so much that they forget how distressing it must be to hear this as a patient - especially as a first time mum of a very young baby.

If you can possibly afford to go go private then I would get on the phone today and sort out an appointment.

I would also make an appointment with your GP for yourself to discuss your own mental health and the stress that this is putting you under.

Sending you lots of strength to get through this

I'm so sorry you are going through this.
Please contact your local mp with details of your daughters case.
We had an incident of terrible care and our mps involvement seemed to light a match under both hospitals involved. You'll get an automatic reply saying they'll be in touch in 7-10 days but he was in touch with the hospitals pretty much straight away and by day 7, after 3 weeks of delays, the patient had had surgery and was in the right place for recovery.

I am so sorry you are having to deal with this. I hope the way they are acting mean it is not urgent. I know a brain mass sounds scary, but it is not always so urgent as it sounds.

People always say to go private without understanding that in rarer issues going private is not an option or can have as long or longer a wait than the NHS. I have experienced this with DCs who have a genetic issue.

Once your baby is in the system for the other hospital phone up and say you will take any cancellation. This can get you seen very quickly.

Also to add, sometimes specialists are crap at communication. My DC see the regional specialist in the country. There is only one. He really knows his stuff and gives great treatment, but his communication is absolutely crap. Specialists advance because they are very good at the treatment side i.e. surgery and other interventions, not because they have any bedside manner at all.

I don't think a lot of people actually think of what is involved when they suggest going private for something like this, or how much more cumbersome it would be than going with the NHS.

That private is great for a simple standalone operation, but for something that may well involve multiple disciplines, unpredictability, etc, then the cost and complexity of it would make it an nightmare in this case. And finding the cash, unless OP or her parents are millionaires, would take longer than the NHS will

The problem here isn't necessarily that this little one isn't getting rushed in for treatment, but the shocking lack of communication with parents.

Poor little angel and poor you as well love prayers and hugs. I hope you get results soon.

Hey @eastview ,I know that no one can do anything to make you feel any better, but I’m glad you have people around you that can help in any way possible. Regarding being seen privately, it may be that you cant get a private appointment any time sooner than the one you already have - my DD has an appointment for her DD to see a consultant (nothing as scary as your baby) in 2 weeks. She can’t get a private appointment before then, which seems bonkers!
Hopefully that wont be the case for your daughter. Take care x

@Somuchgoo I agree. My DC see a specialist who refers to various other areas for regular tests and treatment. I think people think they can buy their way out without understanding the realities of that.

I think the suggestion of going to her GP and getting them to find out what is going on is a good idea.

@Soontobe60 In rarer issues private is often not quicker or even longer as there are often very few people with the necessary expertise. Whereas for common issues loads of Drs can treat you.

I know it's easy to say but please try and not worry - if it was something that needed to be dealt with immediately, it would have been done - you would have been transferred straight away to Cardiff.

Non-emergency transfers take time to send information between two hospitals - it's very likely though that consultants have emailed / discussed between the two hospital trusts without her being on the system.

A paediatric private MRI scan cost 3600 pounds twenty years ago - so if you go down that route, please ensure your inlaws are fully prepared to fund you until the very end - it could end up costing 100s of 1000s of pounds.

Speak to your GP to follow up with what is happening and to organise some support for you.

A mass could mean multiple things, I have a friend who had a cyst (one of the most commonest causes for a mass on the brain) and he's absolutely fine now, but has a "flush" inserted to drain it. The only thing he wasn't allowed to do is play contact sports.

It's a bit concerning that the consultant said what he did to you and offered no explanation as to what it may be. An MRI scan is very detailed and they will have some idea of what it is, ie they would have been able to say if it was a cyst (often form before birth). I would be noting this with PALS. His comments seem dreadful, unusual and not helpful and perhaps he should not be practicing.

Could you get a quicker referral to Bristol? It's got excellent facilities I'm told. I'm not too far so if you do have to have inpatient I can offer practical support. Do pm me if you need anything.

I've been through the seizures situation though thankfully clear mri

I'm so sorry to hear you are going through this. One of mine was very unwell at 4months and had a series seizures and many tests to work out what was going on. I felt sheer terror all the time but was lucky that our hospital were great, in fact the nurses were the best. They explained to me that the Dr's start with the worst case scenario and then start ruling things out from there.

It sounds dreadful that your hospital have been so useless but if you are being referred to a hospital which specialises in paediatric neurology then they will be able to give you lots more answers. For now try not to go down a rabbit hole of the worst case scenario, I know how hard that is because a Dr told me the same thing and of course I did and came up with the worst outcome and convinced myself that it would happen. As others have said, take the lack of urgency as a good sign, keep taking deep breaths and be as brave as you can manage x x

I second previous posters with contact your GP. They should be able to explain more about the scan results and know who you are being referred to. The heath hospital is a fab hospital and I've had lots of experience with the neurology dept and neurologist surgeons at the hospital both pediatrics and adult and they have been excellent.

I'm so very sorry, I couldn't just scroll past without letting you know that you sound like the most amazing mum, and I'm sending so much love and positivity your way.

I think I agree with other posters who are saying go to the GP and if you can't get an appointment, just turn up and explain. They will hopefully be able to advocate for you both and get some clarity on what comes next for you. It's terrible how the hospital has dropped this bombshell on you and left you to it.

The way you feel is valid and understandable. Please be kind to yourself and do whatever it takes to get through the day an hour at a time. Fill your time with distraction and baby cuddles as best as you can.

You're doing so well in horrible circumstances.