Help for HIE

HIE stands for Hypoxic Ischemic Encephalopathy and refers to brain damage caused by lack of oxygen during or just before a baby is born.  Usually the reason is unknown and parents are faced quite suddenly with a grave diagnosis for a previously healthy, full term infant.

My baby Eleni suffered a birth injury that caused "severe global brain damage" or severe HIE.  She lived a difficult 10.5 months before passing away January 2016.  During her life I learned much about brain plasticity and options available to help babies like her.  This page is dedicated to sharing our story and what we learned, with other families facing HIE.

{Anat Baniel Method}

Anat Baniel Method (ABM) is similar to physical therapy, but more appropriate for a child with brain injury.  We first tried this treatment when our baby was 3 months old and saw immediate results.  Even our traditional therapists were impressed and encouraged us to keep going.

At ABM lessons, the practitioner gently moves a child's bones in ways that invite her participation.  They also guide her through a huge variety of tiny motions intended to replicate the kind of random movements that baby's typically enjoy and from which intentional movement can develop.  Basically this method helps the brain to map more of the body, creating potential for movement.

When we learn something, be it quilting or moving, our learning must start right were we're at.  We attempt things just at the boundaries of our comfort zone.  If you're trying to free motion quilt for the first time, it's not nearly as useful to tackle a highly complicated free motion quilting pattern as it is to just make loops.  Making mistakes and trying different things along the way gives the brain an opportunity to really grow and understand.  During a lesson, an ABM practitioner will touch and feel where movement is available in the body and encourage that movement whatever it is.  It's not really about learning one specific way of rolling over (or one quilting pattern); it's about learning how to move so that one's possibilities expand infinitely.

Start ABM as early as possible, even newborn, but it's never too late to try.  If possible read Anat Baniel's book, Kids Beyond Limits, before attending lessons so you have a basic understanding of the approach.  Observe lessons carefully (or even video them!) as there may be something you will want to try to replicate at home.  Unlike traditional physical therapy, an ABM practitioner will not give you "homework" such as stretching or exercises to do at home.  

For more info on how ABM works, visit AnatBanielMethod.com or Normon Doidge's book "The Brain's Way of Healing."

{Dr. Zelinsky}

Dr. Deborah Zelinsky, from Mind-Eye Connection, is an amazing optometrist specializing in neuro-optomeric rehabilitation after brain injury.  She is a fellow in the College of Visual Development (C.O.V.D.) and is honored to be a Charter Member of the Neuro-Optometric Rehabilitation Assoc. and a Life Member of MENSA.  She was twice the recipient of the “Outstanding Young Women in America” award, and is cited in the “Who’s Who in International Medicine."

So, yes, she's amazing.  And she can help!   After examining your baby, no matter how young, she can recommend movement exercises and special prescription glasses that can help wake up your child's brain to her environment. 

Dr. Zelinsky is part of a team of scientists involved in cutting edge brain plasticity research that is proving that the retina is an extension of brain tissue. The retina is part of our our central nervous system, which up until now was thought to be comprised of only the brain and spinal cord.  Alteration of light on the retina (by varying factors such as the intensity, frequency, or direction) changes brain activity. Mind-Eye Connection uses color tinted lenses to affect brain chemistry. They also uses prism lenses to change how light enters the retina, thereby changing the amount of stimulation that certain areas receive.

For more about how Dr. Zelinsky's work is changing the lives of those who suffer brain injury read "The Ghost in My Brain" by Clark Elliot.

{Other Resources}
    • For better head growth supplement breast milk with protein powder.  My baby's head started growing on a curve again after not growing one bit for 4 months!  We preferred this product over commercial protein supplements.  A nutritionist recommended an extra 4 grams of protein per day for our 14.5 lb baby.  
    • For optimal brain health, also supplement with a liquid fish oil
    • You might try working with a qualified homeopath for general immune health and various challenges for which western medicine has no solutions.  Kate Birch is a world expert in vaccine-related injury, which generally involves the nervous system, and is beginning to work with children who have other types of brain injury.  We were fortunate to be able to consult with her via skype appointments.
    • If your baby still does not seem to see properly at 2 months old, take some action.  Little Bear Sees is an easy-to-ready book that will help you understand if your child is showing signs of vision impairment from brain injury.  It also has lots of doable suggestions for helping your child.  Plus, if possible, see Dr. Zelinsky.  I cannot recommend her enough.
    • If your baby does not seem to hear properly or consistently, make an appointment with an audiologist.  Especially if your child suffers from frequent colds and/or does not swallow properly, her hearing may be compromised because of fluid in the ears.  Simple ear tubes for proper drainage can make a huge difference!  After fluid is addressed the audiologist should have suggestions for further testing and possible interventions that can even help deficits caused by brain damage.
    • If your baby has breathing issues (multiple hospitalizations for respiratory distress, severe apnea) push to have a pulse oximeter in the home.   We didn't get ours until baby was 6 months old, and only because I made a case for it for safety reasons.  We absolutely should have had one earlier.

    {the complete Story}

    the big Good News
    dear Cabbage
    the story of our Babes
    on giving Birth
    Eleni's Birth

    an update (MRI results)
    in the evenings (in NICU)
    morning walk (in NICU)
    home at last
    for the Kindness of Strangers
    Eleni, 2 months
    together Alone
    Eleni, 3 months
    Flowers for Eleni
    Eleni, 4 months
    ABM + Dr. Zelinsky
    Eleni, 5 months
    in her blue eyes
    Eleni, 6 months
    Eleni, 7 months
    Eleni, 8 months
    Eleni, 9 months
    Big Brother + Sister
    Eleni, 10 months
    Eleni's passing
    Eulogy
    Bluebirds Fly


    2 comments:

    1. Rachel what an excellent resource you've put together here. How special it is to travel the journey Eleni was on and share in both the triumphs and disappointments. Reading about ABM and the research of Dr. Zelinsky take me right back to Psalm 139:14 "I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well." Oh our Awesome God!

      Eleni was fearfully and wonderfully made, and she forever changed the lives of so many people - me included. Thank you for sharing her with us.

      ReplyDelete
    2. Hi Rachel. Só sorry for your lost. Can even imagine what your family go trough. Want to say more but my english Is not very good...
      Tks for the courage to share Eleni.
      Maggie from Portugal

      ReplyDelete

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