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.

Oh gosh, that sounds really really tough. I hope that things start to get a bit better for you all and that she’s back to her smiley self very soon. Do you have people around you who can help you?

Hey, don't worry about the house being a mess. That's normal with little children. Just look after yourself and your little family.

Your daughter is absolutely beautiful, I saw her pictures.

I really hope she gets better soon.

You are awesome xx

Been wondering how little Delilah is doing! Love the cute photos.

It's no wonder you are exhausted; hope this rough spot passes soon for you and you get up to London OK for your appointment. She's a happy girl and won't remember the medication moments.

That sounds so hard. Rather than leave her with anyone, do you have someone that can come and sit with her while you sleep in the next room (or even the same room while you kip on the sofa) so you can at least switch off and rest a bit. She won't remember all the pinning her down for medication, and it won't make her love you any less. Hang in there.

You sound as if you've been through the wringer. Messy house doesn't matter a jot. Fingers crossed your appointment goes ahead and you get some more answers for you and your fabulous girl. Even though she has to deal with some stuff no tiny girl should have to deal with, her joyous personality shines through. You must be so proud of her. What a wonderful Mum you are.

Oh mate! I totally get you.

when my little girl was on active treatment for her cancer related illness i had to give her a whole plateful of medications multiple times a day, some of which tasted awful (cyclosporine! 🤢) and it absolutely broke me to have to get it into her (pleading, bribing, negotiating & occasional forcing, I’m horrified to say) and she was 6.
For a long time she resented and mistrusted me because she had it in her head that if mum hadn’t taken her to hospital, none of the awful tests, procedures & medications would’ve happened. Of course, if I hadn’t taken her to hospital we would’ve lost her, but you can’t tell a child that!

Anyway, she’s starting secondary school in September and she’s a healthy, growing, on target for everything (mostly caught up academically after a missed year of school too).

I felt like I was living through some sort of purgatory at the time, but here we are on the other side, and she’s thriving.

Just focus on the good bits and try not to dwell on the medications. You are doing what has to be done to keep her safe and well and sometimes that means doing stuff that makes you temporarily the bad guy (like nasty medicines or holding your child still while they get a cannula or sending them into an MRI machine alone).

OP, I'm so sorry.

Wanted to write something similar about anyone who can come in and sit with your beautiful daughter while you rest close-by or in the same room. Also please don't worry about the house being a mess - do accept any help, maybe there is someone who can do some laundry for you. Please also look after yourself as much as possible, try to get some fresh fruit and healthy-ish ready meals to help keep you as well as possible.

Oh bless you all. Firstly, don't worry about the state of the house and eating junk food because you just need to do what you need to do!!!
I hope your little one settles soon

Hugs to both of you one day you’ll look back and this will be in the past you’re not a bad mother you’re helping your beautiful baby to survive with the meds.

I think she's the most beautiful baby I've ever seen, and mine were quite good looking 😁

Messy house, junk food etc matters not. She looks so contented, you're doing an absolutely amazing job x

I am so sorry you are experiencing this. It must be so difficult. I do have to tell you, though, when I see the pictures of your daughter they make me want to squeal with delight. She is adorable!

What is worrying you about the house? Are people offering to help? if so set them tasks.

When DD was a sick baby, one friend used to come round and take over. She would cook and feed me and the baby. A neighbour managed to knock on the door every day and either say that she was going shopping, did I want anything, or invite me in for a coffee, or come in and make me a coffee. DD used to scream in pain for hours so I did not have the energy to reach out, but was pleased when someone else took the initiative. Similarly a group of local nannies had the confidence to look after and feed a baby with a severe cleft palate. I would not have ever picked up, comforted and tried to feed someone else's baby, but they did this professionally so were able to give the mum a break.

So do you know of a good local cleaner? Would a friend or relative treat you to a house clean? Could you ask a friend who wants to help to come round bringing dinner? Is someone willing to mow the lawn. People will understand if you say you feel overwhelmed, and most will be delighted to help.

@eastview I'm so sorry this is happening to your family. And you are feeling overwhelmed. When our little ones are going through serious health issues it can make us as mums feel so inadequate. ..we are used to being able to 'fix' things for our babies...it's so, so scary when we can't fix it. And also extremely draining.

They will be able to find out what is happening at GOSH. You are getting her treated at one of the best children's hospitals in the world...She's a strong little girl and has parents who are with her 100% of the way.
I will pray for your family to have the strength to get through whatever is in the future.
You have all of us on Mumsnet praying and supporting you as much as we can. And we are sending positive vibes out through the universe to you.

@eastview It's very normal to experience the feelings that you are feeling. You're going to get through this awful time.

I'm so sorry for what you're all going through. I hope the trip to GOSH brings you some more certainty and relieves some of your worries. I know how hard it is making them do things they need but can't understand yet, your DD will forgot about the medication in time, the the messy house and takeaways truly don't matter in the scheme of things and the exhaustion is soul destroying, but you'll find you go on somehow. Your darling little girl lights up the page with her gorgeous smile, you'll find you way through for her, she'll get through this because she has you fighting for her and protecting her.

@eastview hang in there. We have all witnessed your strength over these last six months. You are a very strong woman and an amazing mother. Please keep posting for support and as this thread is over 900 posts please think about starting a new one so we can all keep your family in our thoughts

💙

Thank you so much everyone for your kind words and offers of help. We are all packed up and on our way to London. As usual my girl thinks it’s a holiday, just look at her face meanwhile we have been up all night worrying haha. Hopefully we get some good news x

She looks beautiful. Hope it goes really well for you.

I've never seen a more stylish baby! Hope all goes well xx

Hope all goes well today, OP. Sending my best.

Hope all goes well

What a dear girl.

Safe journey, and please do start a new thread. We're all here for you.

Hope all goes well.