4-day old with bacterial meningitis & severe brain damage

[cjje2123]

Posting this from the hospital and looking for any parents who have been through a similar situation. I’d also love to hear any “miracle” stories of babies who have beaten the odds and are thriving after brain damage…I’m desperate and just looking for any hope at this point.

Our 4-day old daughter caught strep pneumo after we were discharged from the hospital and had to be rushed to the ICU. She was soon diagnosed with bacterial meningitis. Doctors told us that it is very rare for a baby this young to catch strep pneumo and we were just extremely unlucky.

Our baby is now 15-days old, and we’ve been told that we’ll be here for at least another month. She’s currently intubated, on a feeding tube, and heavily sedated on 3 anti-seizure meds. Her MRI reveals severe, permanent brain damage to the basal ganglia. Neuro said the most likely outcome is that our baby will have severe physical and cognitive issues as she develops.

I’m so very much looking forward to the day we make it past this phase and can bring our baby girl home. But even then it doesn’t feel like there’s any light at the end of the tunnel because of Neuro’s prognosis. I’m distraught, completely heartbroken, and feel so hopeless…

[CharliesMama]

Hi mama. I don’t have a baby, but I am also in the hospital with my thirteen year old son who has bacterial meningitis, so my heart is absolutely with you. And I know it’s not the same, but my son was premature and on life support and as a result ended up with developmental disabilities and ultimately autism. But he is so amazing. So smart, so sweet, so loving, kind and honest. I wouldn’t change him for the world. It’s so hard in the moment because you’re grieving a future you imagined for them, but you never know what the future holds. So many obstacles can be overcome.

This is a poem called “Welcome to Holland” that always brought me comfort. Hopefully it can bring you some comfort too!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thinking of you in this difficult time! ❤️

[Fortywinks4 in reply to CharliesMama]

This is beautiful. Thank you.

[agapelmh]

How is your little girl doing? Been thinking of her. Babies are tiny and fragile, but at the same time their bodies are strong and adaptable. Hang in there.

[cjje2123 in reply to agapelmh]

I’m heartbroken to share that our baby died after a month battle with bacterial meningitis.

[agapelmh]

I am so very sorry to hear that. Praying for you. Isaiah 25:7-8 says "And he will swallow up on this mountain the covering that is cast over all peoples, the veil that is spread over all nations. He will swallow up death forever."

[Holiday2321]

I'm so sorry to hear you're going through this. Sending your family all my love and wishes for the best recovery possible for your little one.

My son went into PICU with bacterial meningitis when he was 4.5 months. He spent three weeks at Great Ormond Street and we we had a chat with the consultant to "manage expectations" and when he woke up he couldn't hold his head up or swallow properly, and needed a feeding tube for about three months. We had absolutely no idea what to expect and weren't talked to about brain damage but were told about the after effects of getting meningitis, some of which we are seeing, but recently had our one year appointment with his GOSH neurologist who said he wouldn't have thought our son would have come this far and was so surprised.

So we didn't have a clear cut picture of what his future would look like, but he fought so hard and came so much further than anyone thought. Little ones are so resilient and I'm sure your little one will fight so hard and amaze you with their strength ❤️

Sending you so much love. X

[cjje2123 in reply to Holiday2321]

Thank you so much for your sweet message. I’m so glad to hear your son recovered and is doing much better than the doctors thought.

Our daughter condition worsened, and she died the day she turned 4 weeks old. We’re heartbroken and miss her every day.

[Holiday2321 in reply to cjje2123]

I'm so so sorry to hear this. I can't begin to imagine what you're going through and am just sending you all my love and support through what must be a devastating time. You will be stronger than you'll ever think you're capable of, even if you can't see it now ❤️