I am wondering about long term effects of Group B Strep

My son was born on April 4, 2013. He seemed totally normal and healthy. Within hours he was grunting, crying and wouldn't latch. He was evaluated and admitted to the NICU. The GBS culture grew positive in 8 hours (this is crazy to me because he is my 3rd child and every GBS test I received with each child was negative) Everything was done for him that could be done there. He was transferred to a higher level facility that could do ECMO. ECMO was the last resort to save his life and it worked.

He is 7 weeks old tomorrow. He received a full course (two weeks) of Ampicillin and an additional 3rd week of Ampicillin to treat possible Meningitis. He was never stable enough to get a lumbar puncture to confirm Meningitis.

His final diagnosis was Group B Strep with Pneumonia, Sepsis and PPHN. He never had any bleeding in the brain. He passed all of his ultrasounds perfectly. He passed a normal MRI and a normal EEG. My doctors were honestly amazed! They couldn't believe he survived. He passed the hearing test given in the NICU before discharge and it seems right now that he is seeing things.

I have asked many many times to many different doctors and no one is willing to give me any idea of what possible long term effects he may encounter other than hearing and vision. Everyone says it is a good sign that he has passed all of the tests and we just have to wait and see.

Can anyone give me more information or tell me what to look out for?

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  • My eldest boy had exactly the same, he is now five years old- was treated via ECMO at the fantastic Glenfield Hospital PICU, he underwent all relevant health checks and was finally discharged from paediatrics at the age of three. He is a living miracle- how sick he was and to have made a complete recovery, no physical or learning problems- we are so blessed he is OK, I am sure that if your little one has passed all the checks he will be just fine- I was exactly the same as you I am hoping you have the same with your little man x

  • I'm so sorry to hear how poorly your son was after his birth. What a nightmare for everyone.

    It can be hugely difficult to predict what if any long-term effects severe infection in newborns will have - babies often surprise even the most eminent and knowledgeable doctors! So it's probably not so much that they're not willing to give you a steer, it's more that they simply don't know themselves particularly, as you say, he's amazed them already.

    It is really hard to watch and wait but no-one can say for sure what long-term effects his infections will have - hopefully, like Eema1980's baby, none at all.

  • I have a 19 yr old son who was born via emergency c section because of complications of B strep. His organs were immediately affected all started to shut down he stopped breathing 3 times and spent the first 10 days of his life on life support and IV antibiotics... He came through seemingly fine passed all mile stones early, growth on target, seemingly no physical or educational issues at all. At 10 mood disorders started and has been diagnosed with everything from ADHD, Bipolar disorder, and at 14 early schizophrenia. Now at 19 he is being worked up for some type of autoimmune disorder, his liver is enlarged his gallbladder will have to come out, blood work shows hyothyroid... Link between B strep and all this my gut says yes!!... If your b strep child gags when they sallow food, nothing tastes good, complains of pain on right side along ribs around back across stomach or has periodic vomiting 30 min or so after a meal... It may not be the flu, it may no be a slight sports related pull or strain, dont let them give your child zantac because the "reflux" is from mood disorder meds..exc. At 19 we have a swollen abdomen with enlarged liver, gullbladder that needs to come out, thyroid not functioning correctly, vomiting two to three times a day, always tired quality of life directly impacted... Pay attention to these signs EARLY dont brush them!!!.. If it seems a little excessive then normal DEMAND liver function and thyroid tests!!!! B strep attacks the organs long term damage and problems can be minimized with those simple tests every few years.. Good luck and god bless.

  • Sorry, to hear that about your son. But my 1 yr old has been throwing up and gags every time I give him something to eat. He also throws up ones or twice a day just about after his bottle feeds. He was already been diagnosed with "Biliaryhypo Plesia" and his liver would need to be changed/ transplanted. When I mentioned this to the doctors, they said it may had to do with his speach (???). But thanks to this knowledge I got from you, I will mention it again to doctors. Thank you for your story, help and warning, I did learn something new and helpfull. I wish the best for your son and hope he gets better soon.

  • My 15 yo stepson just came to live with us and is having many of the symptoms you mentioned that your son has had. Right now we are having him evaluated for depression and possible schizophrenia.There is no family history so this seems like a likely explanation. He had a super rough go of it with strep b as a newborn.

  • My grandson was born with Strep B also. They knew my daughter carried and it somehow forgot to adminster the drug to her 1 hour before she had her c section. My grandson was born unresponsive. They immediately sent him to the NICU and put him in a cooling off period where they stop all brain activity incase their is any damage. He actually came through it all pretty well. But like you we are wondering what the long term affects are. He has a few learning curves mostly just a late bloomer at this time.

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