Real or False Hope after Early Brain Damage?

damaged-brain

What is the expected outcome in a child with this degree of bilateral brain damage? 1 The vast majority of professionals would say that this child would grow up to have a fairly severe form of cerebral palsy. And that is what countless thousands of parents have been told when their baby has an abnormal brain scan. To hope for recovery after an abnormal brain scan is considered to be False Hope. As two noted CP specialists recently wrote, “While there may be no hope for a cure… there is much that can be done to enhance child and family development and well-being.” 2

I strongly disagree with this position and the neuroscience literature is on my side of the debate. For the first 4 to 6 years of life, baby brains are actively growing and have high levels of neuroplasticity. There is further neuroplasticity throughout childhood and it peaks again in puberty. Harnessing this neuroplasticity is the basis for Real Hope as brains repair, rewire, reallocate and reorganize throughout life.

I did not start out as a neurorehabilitation physician. I started my clinical career as a neonatologist where hope was often all we had, as we tried first to save lives and improve the odds of intact survival. I also worked in Neonatal Follow-up and saw the babies who did not fully recover. Again, in those early years, we had very little more than hope to offer. But I never questioned that my job was to do my very best to improve the condition of all the children throughout their lives. And 40 years later, there are so many evidence-based and best practice techniques and technologies that improve the lives of children with CP and other early brain or nerve problems, that there really is no justification for those who still maintain that there is no hope of a cure.

In my experience, accepting a No Hope outlook has never improved a child’s care.

I look forward to your input on this important topic.

  1. J.S. Wigglesworth: Plasticity of the Developing Brain in Pape, K.E., and Wigglesworth, J.S., eds. Perinatal Brain Lesions. Contemporary Issues in Fetal and Neonatal Medicine Series, Vol. 5, Blackwell Scientific Publications Inc., Boston, 1989
  2. Peter Rosenbaum and Lewis Rosenbloom, Cerebral Palsy: From Diagnosis to Adult Life, London: Mac Keith Press, 2012, p112, italics added.

 


16 Responses to “Real or False Hope after Early Brain Damage?”
  1. I’m a strong advocate of early intervention in cerebral palsy and agree that any determistic statement towards child’s outcome after brain damage has never improved care. Nervertheless, neuroplasticity is a life long process and our mission is never give up hope specially for the late presentation cases. There’s always hope for something bigger meanwhile our patients are improving everyday! That’s is quite exciting already!

    • Karen Pape says:

      I completely agree.If you watch my TEDx talk on the home page, you will see how much change is possible, just by revealing the recovery hidden by early habits. When I think of the accelerated pace of discovery in the neuroplasticity world, I think we all have reason for more, not less Real Hope.Our collective challenge is to help the child find and use whatever brain there is….and I am constantly amazed to find just how resilient they can be. Thank you for your comment.

  2. When I was a toddler, doctors, physical therapists and teachers have noticed that I was ambidextrous. However, teachers used negative reinforcement therapy to make me right handed. Their thought was that I would be thought of as a freak if I can use both hands. I think this was wrong. I was thought of as a freak but not because of my ambidextrous nature, but because of the way I walk (cp:spastic diplegia). The way I see it, if I had limited use of my legs, they should have never conditioned me out of ambidextrous-icity. Later in life (age 12-18), though, I had begun a way to retrain my brain to use both sides of my body to give me that edge, that advantage in my arms and hands to help make up for the lack in my legs. I know first hand (no pun intended) about the effects and truth behind neuroplasticity and Dr. Caroline Leaf’s research on the subject.

  3. Chris Jones says:

    Im hopeful for this family and inspired by the hard work and dedication of his medical team and the scientists behind them! I will follow this story closely with fingers crossed!!

  4. Michelle says:

    We have an almost 9 year old daughter, born at 28 weeks. From MRI scans at only a few weeks old, one side of her brain did not develop. We were told that she would never walk, talk or even move independently. It is absolutely amazing what medicine, intervention and “real hope” can do. She proved every prognosis wrong! Discharged from the neurologist by age 2. On several occasions we have had specialists ask “Are you sure her films were not switched with another child’s?” She clearly does not represent what her images did! Brains absolutely DO repair, rewire and reallocate and reorganize.
    It is discouraging when the “experts” lead you to believe there is no hope, but when you’re a parent you believe in real hope. If we didn’t, our daughter would never have come as far as she has!

    • Karen Pape says:

      Thank you for sharing your story of Real Hope.If only we could get everyone to understand the possibilities for recovery, the field would become more positive and the outcomes for all the children would be improved by this important change in attitude. Without hope, it is all too easy to accept the status quo and not push for best possible outcomes.

  5. Gretchen Carothers says:

    Karen,
    Thank you so much for your work and your message. I am a special education teacher and new mom to a baby girl (born 12 weeks early, now 1 week adjusted) with a right side grade 4 IVH. Her prognosis was very bleak at the beginning but as of today she appears to be a typically developing infant. Even though she is doing all the things an infant should…she moves well, makes eye contact, eats well and is gaining weight like a champ, I have been so worried about her future. As a Special Ed Teacher I’ve seen the spectrum of possibility and so I’ve been attempting to educate myself about early interventions and methods to use in these early years. Thank you for injecting a little hope into the IVH conversation.

  6. Kate says:

    My nearly 8 year old daughter had severe cystic bilateral plc damage and we were told when she was a month old would most likely have cp, develop quadriplegic cp and would be blind or half sighted. She went from evolving quad cp to confirmed and had homonymous hemianopia field deficit. She had sdr just before she was 6, she cannot walk independently, with a walker, but we are hoping she may make further gains and will maintain the mobility she has through her teens when it seems from what we’ve been told weight could act against this. If a child goes into early puberty which think my daughter may be doing now, as her body shape changin, is that when another window of opportunity is occurring due to hormonal change? Is it a good idea to try and delay early onset puberty with medicines or is it case that would still have heightened period of plasticity opportunity in teens even if hit puberty before 10 years of age Thank you

    • Karen Pape says:

      Thank you Kate for a VERY good question.Puberty is associated with the second burst of neuroplasticity and there are many factors that work to make these changes.I would talk to your endocrinologist…after you explain about the second peak of neuroplasticity and ask for advice.
      I do not know of any studies that have been done on this subject.

  7. Jo says:

    We have a child with severe cerebral palsy who was not expected to survive her 1st year of life, and that she may just lay blankly but were told we will get out what we put in. After all the care, love, laughter, physio , sensory stimulation and determination to try and keep her well she is now 8, has a great sense of humour laughs with us and enjoys life with us , she gets accross what she wants in her way and understands probably more than we know and she learns a little something new every year. She is amazing Xxx

  8. Sam says:

    Most defiantly. Plenty of love, buckets of positive energy and a tone of support and your child will get there never say your child can’t do something because then they won’t try tell them every day you got this you can smash this life ans be what you want to be. We blessed our daughter at 6 days old (give in her her last rights ans saying goodbye) the next day she opend her eyes as if to say I’m not going anywhere I believe the love and energy we gave off to her in NICU was absorbed and when you pray amd want something some one so bad you will get it. X

  9. Jodie says:

    Our now 4 ýear old daughter was born 1 week late. She was a face presentation and HIE grade 3. After 72 hours of cooling and several MRI scans the outcome was black. We wasn’t bringing her home, or if we did she’d have no quality of life.
    I’m pleased to say “How wrong was they”
    With a lot of love, dedication and HOPE she has overcome so so much.

  10. Patty O'Machel says:

    Karen, My daughter was diagnosed with SDCP after losing oxygen from the whooping cough at 3 weeks. They said they found brains scarring at 9 months in an MRI. At 9 years we were told after another MRI that she was misdiagnosed, and had no scarring, but that her cells went to atypical places during pregnancy and she has a cortical cell abnormality. And like the comment above, asked if the films were mixed up at 9 year MRI because my daughter should be in a wheelchair unable to walk or talk, and have seizure disorder. She never walked independently, and since surgery now uses a chair, but other than that she is a normally developing 12 year old doing great in school and as typical a kid as can be. But now with this new diagnosis of Cortical Cell Abnormality I am wondering if we should be addressing this differently. The doctors are still treating it as CP. And when we asked the doctor if we had been doing everything wrong for 9 years knowing now she doesn’t technically have CP, he said because we didn’t know she was not supposed to be able to do anything, we treated her like she could do everything, and that made all the difference. Our ignorance and her misdiagnosis may have been a blessing in disguise. Not knowing worked wonders. Now she is going through puberty, so I am also wondering how to harness this power of neuroplasticity. I don’t know anyone who is addressing this or have not heard of anything to be done. But I am willing to do whatever it takes for my little girl. Please advise if you have any advice

    • Karen Pape says:

      When there is a discrepancy between what a scan shows and what a child can do, I always go with the clinical picture. I would read my book and think about trying some new interventions as her brain matures. Technically, CP is a generic diagnosis that originates by a wide variety of causes under the age of 2 years and the changes in her clinical picture with growth are the same. I would push the neurologist for a clearer diagnosis at some point.