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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.

OP posts:
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BellePeppa · 21/11/2022 11:48

What a darling little girl. Obviously so well loved and cared for. Wishing you all the luck in the world and your daughter gets back to being healthy. 💐

ilovebrie8 · 21/11/2022 11:50

Good luck today OP, fingers crossed for you...your girl is adorable xx

IncredibleSulk · 21/11/2022 11:51

Wishing you and your lovely girl well today. Xx

steff13 · 21/11/2022 11:51

Good luck. I hope all goes well.

Frasecam · 21/11/2022 11:51

Good luck today xxxx

Sleeepdeprived · 21/11/2022 11:52

I’ve just come across your thread and I am so so sorry. Best of luck to you and your gorgeous girl today. I’m praying for good news xxx

Irishfarmer · 21/11/2022 11:53

I hope all goes well. You're daughter is beautiful. I really can't imagine how you must feel, my DS is also 4 months old. Hopefully you get answers soon x

dcadmamagain · 21/11/2022 11:54

This post sent shivers through me and I could feel your stress and pain - I can’t do anything but wish you all the best in the world xxx

Somuchgoo · 21/11/2022 11:57

WhiteRidgeDoor · 21/11/2022 11:38

Good luck. You won’t need the Ronald McDonald house as they expect and have rooms set up that one parent is with the child 24/7 so you won’t have to leave her.

It's much easier if both parents can be around, and have a room there, so they can swap, cook, do laundry etc. That's what we did, and it helped keep us all sane, but you're right that the wards are set up so that you never need to leave your child's side thankfully.

Hopefully this little one will be home soon with a non scary diagnosis, so it'll be academic!

Needmoresleep · 21/11/2022 11:58

GoldIsMyChosenMetal · 15/11/2022 11:59

When you ring again and she is on the system, can you find out who she is under, get put through to the secretary. Then ask if you can email a message to consultant say “about her symptoms” if necessary/hesitation. Then write as succinctly as you can (not about the name being wrong etc) but when symptoms started, what you know and that whole family beside themselves/distressed that this is a brain tumour and that you need someone to speak to you about next steps as soon as possible.
Otherwise just think about the things you might need /miss if you do need a hospital admission and focus on those. NOT because she is not going to survive BUT because if you are busy/distracted you have more chance of mentally managing whatever lies ahead.

This is very good advice.

Also if you know someone who is a hospital doctor or nurse, reach out and ask if they can help you with negotiating your way through the system.

It was 24 years ago since my baby was very sick. My doctor friend gave me exactly the advice above. I was lucky and my baby is now a healthy 24 year old, about to qualify as a doctor herself. I felt I was being pushy at the time, but without prompt care she could have suffered life altering damage.

Also allow friends to help you. I was pretty paralysed with fear and a couple of kids friends looked after me: food, shopping, or just company and a coffee.

MonkeypuzzleClimber · 21/11/2022 11:58

Your daughter is a sparkling jewel!
I hope her joyous outgoing nature, and the great start you’ve obviously given her help a little to get her through the this x

KeziaOAP · 21/11/2022 11:58

Your daughter is gorgeous!. Will be thinking of you all today.

Unicorn34 · 21/11/2022 12:01

I didn't want to read and run - I am so sorry that this is happening and can't even begin to know how you and your DH must be feeling. Just sending a huge hug xxx

NiceParkingSpotRitaThanksJanet · 21/11/2022 12:01

Thinking of you and your lovely little one x

Puzzledandpissedoff · 21/11/2022 12:05

Very much thinking of you, OP

MillyMolly74 · 21/11/2022 12:07

Thinking of you both 💕Lots of love 🌸

WhiteRidgeDoor · 21/11/2022 12:12

@Somuchgoo i hadn’t thought about it that way and that makes a lot of sense. Sorry you also had to go through this.

RedorangeyellowBLACK · 21/11/2022 12:12

Wishing you all the best for today, finger crossed for good news. Your little girl is absolutely adorable 💕

ChittyChittyBoomBoom · 21/11/2022 12:12

What a beautiful little girl!

I’m thinking of you and hoping today goes smoothly. Lots of love xx

HugHeart · 21/11/2022 12:13

Good luck today.

What a gorgeous child she is - great dress sense!

OnlyFannys · 21/11/2022 12:16

Thinking of you and your beautiful daughter today, I cant imagine how you must be feeling

MrsPerfect12 · 21/11/2022 12:16

Wishing you all the very best for day. Sending lots of positive vibes your way. Xx

Mitzigaynor · 21/11/2022 12:19

Good luck.
Hoping for the best possible outcome. X

Daisydoor12 · 21/11/2022 12:20

All the best. Your little girl is gorgeous.

BuffyFanForever · 21/11/2022 12:26

Wishing you and your lovey little one all the very best with the scan today x