Baby son - MRI bad news

[biglill]

Hope this is the right place to come, apologies if it is not.
My baby boy contracted group B strep meningitis at birth 10 weeks ago, he was ravaged with it and we came close to losing him. He fought hard and did however pull through. We then had the MRI and were not prepared for the news we received. From what I managed to take in, there is damage to the basal ganglia and elsewhere which was described as 'startling', they predict spastic quadriplegia, severe CP and learning difficulties, in fact they seemed to think we should be prepared for anything and were unsure if he would be able to even swallow etc.

I have never been so frightened and lost in all my life and ten weeks on can only hope I have misunderstood or it is all just the worst of bad dreams.

After five weeks in hospital (and another meningitis scare), he is making (I think) good progress. He breastfeeds (which they didn't think he would manage) and has just started smiling at me occasionally, is tracking better with eyes - although he prefers looking to his right and does this most of the time. He still has no head control.

I'm not sure what I want to hear, I guess some words of positivity from people who might actually understand. I was told I would go through a grieving process and should allow myself to 'fall apart'. I don't want to do this though as I have a two and four year old who need me to be strong, my baby needs me to be strong and positive surely too and why grieve when my beautiful boy is here with me and smiling? I do get very sad though of course and can't bare to think what the future might hold for him, I just feel so sad for him and angry too that I wasn't tested for this infection.

[biglill]

Ooh yes I have booked little fella in for swimming lessons with puddleducks as of September (I did this from three months with both my girls and he will be three months then). I can't wait, looking forward to attending something 'normal'. I explained his situation and they have asked for letter from paed, they are concerned he won't have diving reflex as much of the class is based on underwater swims. They said they will tailor the class to keep him above the water. I would quite like him to be able to try the underwater stuff though, all his other reflexes seem fine so far! OH is also a bit worried about puddleducks as lo has poor neck/head control, I am sure I can make sure his head is supported and also hope that by September it will have improved anyway.
I am grateful for every message posted, you are right about it being an education, I feel much more clued up from joining here than I ever did in the hospitals.

[hazeyjane]

Biglill, it might be worth asking the physio about hydrotherapy sessions. Ds does them weekly and they have been great. The warm water helps the muscles, and a trained physio would help create a programme designed specifically for your ds.

[Lyns22]

Congrats on the birth of your wee boy. And secondly I'm sorry he's having a hard time.
Although our babies are different I do understand how you feel. My baby girl was born 6 weeks ago with only 1 eye. Like your son she has had MRI tests plus spine X-rays and ultrasounds of all of her organs.
It's hard trying to cope knowing your lo may struggle while others can just breeze through life.
It's hard not to but try not to question too much, it drives me crazy that scumbags out there have healthy babies and my baby was born with such misfortune even though I did everything in my power to give her a good start during pregnancy.
You are the best thing for your lo. You can take care of him and love him like your heart would burst. I believe the people that tell me know that we're only given as much as we can handle. Cry when you want and keep loved ones close xx