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A two month old baby needing transplant

edited May 2023 in Pre-transplant

Hi all, my little 2 month old baby needs a bone marrow transplant for genetic bone marrow failure.

Has anyone been through this with an infant? What helped you get through to recovery? How did you deal with teething, Crawling and them putting their hands in their mouths all the time? We've been at the hospital most of the time, but I am just dreading seeing her weak or in pain after conditioning.

They are planning to do FTT conditioning for her. Has anyone been through it?

Would you try to save a slice of her ovary so she could have children or skip it considering she's got no neutrophils at the moment and it is a procedure which carries risk?

There are a few bone marrow matches identified - some of them 11/12. Would you consider that a good match?

Have your children led normal lives after BMT?

Was the pre transplant conditioning worse than cancer chemo?


  • Hi. I am a patient on here so do not say I am an any authority on this. However I can say I have seen posts / updates from parents who have had young children / babies who have gone through stem cell transplants that have been very successful. However every bodies recovery is different and recovery rates are also very different for each person. It will not be an easy trip for your baby or you and you both will need a lot of support. GVHD is very highly probable after transplant and you want some to a degree anyway to ensure the new immune system is working. An 11/12 match probably means the chances of gvhd will probably be there but will give her a good chance. If she is nuetrpenic the quicker the transplant happens the better to give her a chance. Otherwise the doctors can do the best they can on antibiotics. Good luck and I wish you all the best. I know this will be a very difficult time for you.

  • Hi Dave, thank you so much for the reply. I hope you're feeling well.

    They are trying to minimise the GVHD, as she doesn't have cancer so the benefits of the new immune system attacking any pathological cells are simply not there.

    It's been quite difficult so far... even without the transplant.

    There's one more thing I'm wondering about - they've mentioned lifelong penicillin prophylaxis - is that common?

  • Hi Maggiemoo.

    it seems all stem cell transplant patients are given penicillin tablets for life. I believe it is precautionary in case your body cannot deal with something it catches.

  • Hello
    Re lifelong antibiotic treatment - the rationale for this may be very different for your baby’s circumstances, but could I refer you to this link, as this question has come up before on this forum.


  • Hello Maggiemoo,

    I hope things work out for your baby. I had a boy in my class as a primary school teacher. It was in the 90s. He recovered well from sct leukaemia and put it behind him.

    I think the young body has very powerful regenerative power.

    Love and strength to you and your baby.

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