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Newborn with spinal injury, hopes of recovery?

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  • Newborn with spinal injury, hopes of recovery?

    My 3 week old daughter was admitted to the hospital because she wasn't gaining enough weight and had "floppy" arms. After a few days of testing the doctors told us they found a mass on her spinal cord from C3 to T2. They then told us that it was inoperable and that she probably wouldn't make it through the biopsy because it looked like it was inside the spinal cord. Luckily for us they were wrong, once they went in for the biopsy they found that it was next to it and putting pressure on the spinal cord and were able to successfully remove all of the tumor. The pathology came back as neuroblastoma, a type of cancer that in her case needed no other treatment after being removed. Now that she has been deemed cancer free we are moving on to recovery. It has been 3 weeks since the surgery and she is now moving her legs, biceps, toes, and a little finger and wrist movement. We tried to remove the breathing tube twice and she breathed on her own for 6 hours each time but then began laboring and collapsed a lung each time. Her diaphragm and intercostal muscles work, they just need to be stronger. She has a trach and ventilator but the vent isn't doing much work and they seem optimistic that we will eventually be able to wean her off of that. She is showing small improvement all the time, but she has still not shown any movement in her triceps. I understand that C7 is where that is controlled, so if everything above and below that seems to work ok, will the triceps control concievably return? Some of her functions came back right after surgery, some took longer (we didn't notice wrist movement until a few days ago). After three weeks could there still be swelling or bleeding that would affect this? And is there still hope of her regaing her tricep function?

  • #2
    sounds like she is on her way. what a wonderful blessing that they were mistaken.


    • #3
      Oh dear, what a horrible thing to have to deal with, but the good news is that there is every reason to believe she will keep improving. With traumatic SCI there is a two year window where recovery is likely to happen if it is going to. The fact that your daughter is already moving so much of her body is a great indicator of things to come. While a terribly frightening place to be, it is wonderful news that they were able to remove the tumor without huge adverse effects. Wishing you a swift trajectory towards healing for your daughter!


      • #4
        Have you consulted with an oncologist about the neuroblastoma diagnosis? that concerns me as much - actually more the SCI trouble (which sound as though they are on the right track to recovery).
        Ugh, I've been kissed by a dog!
        Get some hot water, get some iodine ...
        -- Lucy VanPelt


        • #5
          Might want to check out Catherine might be able to answer some questions for you. We met them at Project Walk recently.


          • #6

            Yes we have a team of doctors at Mott Children's hospital (university of Michigan) neurologists, neurosurgeons, otolaryngologists, oncologists, etc, etc... She finished up all of her screenings/tests for the cancer and everything has turned up negative, showing no presence of tumors anywhere else (including marrow). The oncologists explained that in an infant, neuroblastoma often needs only a resection to defeat. In older children, (even as young as 2 or 3) it is a much worse prognosis. They determined that there will be no need for any chemo. Obviously she will continue to be screened and tested periodically to ensure that it doesn't reappear, but they say that is highly unlikely.


            • #7
              Never underestimate the power of youth when it comes to healing!!! Best of luck to you and your family!
              "The truth will set you free. But first, it will piss you off." -Gloria Steinem


              • #8
                Where is she currently? I would be trying ASAP to get her into a pediatric spinal cord injury rehabilitation (actually "habilitation") center that takes ventilator dependent patients. My first choice would be to look at one of the Shriner's SCI Centers (there are 3 in the USA). Other options may be Madonna Rehab in Iowa or the Rehabilitation Institute of Chicago. Unfortunately I don't believe that Craig in Denver has a peds program, but you could definitely check with them.

                Vent weaning for people with SCI, including infants, should be done with CMV mode, not SIMV, and should include SHORT periods several times daily of breathing on her own (starting at 30 minutes, not 6 hours) with complete rest (ie, the ventilator breathing for her) in between. These times should then be gradually increased in both numbers and length of time. This allows her to strengthen her diaphragm over time and not become excessively fatigued. It has been estimated that for adults with tetraplegia that it takes up to 9X as much energy just to breathe as it does for ABs. I assume it is very similar for infants and children. You may want to download and share with her team the clinical practice guideline on respiratory management in SCI which you can obtain for free here:


                She also needs to be working with both PTs and OTs who have special expertise and experience in infants with SCI. Many do not.

                It is way too early to tell how much strength she will get and in which muscles. Best plan is to plan on her not making gains when planning on discharge and getting her home, but to keep looking for and maximizing the gains she makes by using as much therapy as possible to strengthen what does come.

                Please continue to come here and ask questions. We will try to help as much as we can.

                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                • #9
                  SCI Nurse,

                  We are at the University of Michigan Children's Hospital. We are currently in the Pediatric Intensive Care Unit, but will be moving to the Stable Ventilator Unit soon. The two times that she breathed on her own for 6 hours were not part of the weaning process. They tried twice to extubate her and she made it 6 hours each time before collapsing a lung. The doctors believe that she didn't have a strong enough cough to clear secretions and that led to her struggles. We should be meeting with the Stable Vent Unit team in the next day or so, and hopefully will learn what the plan for weaning the vent will be. I'm not sure if her vent is set to SIMV or CMV, I'll check when I get there after work today. They told me last time I inquired about the weaning that they were first more concerned with her gaining more weight and getting stronger before starting the wean. She is only 6 weeks old and has been on and off of feedings for the last few weeks because of surgeries and tests. They wanted to make sure she gained som weight first so that she wasn't using all her calories to breathe.

                  She has OT's and PT's that come and work with her everyday, though I don't know if they are specialized or not. My wife is there all day everyday, I have to work and then I stay at the hospital every night. So I miss a lot of information during rounds and such but I will get as much info as I can.


                  • #10
                    God bless the baby & your family, I'm praying for all of you.