INTENSIVE CARE

hesitant and the probable reason that parents are still not given
much hope, is that the research data has not yet caught up with
clinical care. Knowledge overload, silos of knowledge and siloes
of care to just the neonatal period are to blame. This talk and
the positive reaction of my peers was one of the deciding factors
that got me to finally sit down and write this book. It is written
for the parent of an at risk of or diagnosed child with cerebral
palsy and provides them and the professionals who care for them
with a current summary of what we know about the outcomes
after early brain damage. It is also important for everyone to
understand that there are many innovative treatments now
available that are both evidence-based and best practice. 2
Karen Pape, MD, author of the book The Boy Who Could Run But Not Walk:
Understanding Neuroplasticity in the Child’s Brain. www.karenpapemd.com
with information that bears directly on the intensive care of their
babies.
Siloes of Knowledge – All branches of medicine are becoming
increasingly soloed into narrower and narrower areas of interest.
I describe in my book the reality that pediatric neurosurgeons
often know far more about the potential of neuroplasticity
in children than many neonatologists. Each specialty
communicates largely through their own journals and there are
more and more of them every year.
Silos of Care – Many neonatologists never see their graduates
in Follow-Up and miss the chance to see the babies that do
better than expected. Even those in Follow-up rarely are able
to see them long enough to accurately document the amount of
recovery. NICU Follow-Up is rarely funded to see the post-NICU
baby for more than 2 to 3 years and at that age, the baby brain
is still in the process of recovery. I often think the NICU nurses
have a better concept of recovery as in my experience many
of them maintain longer-term interactions with their patient
families.
DD: So how have they responded to your speeches on this
subject?
KP: I was invited to speak Hot Topics in Neonatology in 2013 and
it was a turning point for me that helped me decide to write this
book. I talked about baby brain neuroplasticity and presented
case studies with videos of children who managed to do better
than anybody had ever expected. Probably the most dramatic
case was a young girl who had had half a brain removed in a
heroic attempt to stop her one-sided seizures. The seizures
stopped and she recovered fully apart from mild tightness on
one side and a small defect in her visual field. Children who have
early hemispherectomies, like this child, are one of the reasons
that neurosurgeons know that baby brains can recover.
During my talk I made the point that every neonatologist has
seen at least one baby who did surprisingly well in spite of
bad brain scan. Then I asked them to put up their hand if they
had had this experience. At first there were only a few hesitant
hands but as everyone looked around the room, more and more
hands were raised. Within a couple of minutes 80 to 90% of the
neonatologists had a hand up! The reason they were initially
DD: So how did you come to this conclusion regarding recovery?
KP: Early in my career, I was fortunate to be trained by two
excellent neonatologists, Paul Swyer and Pam Fitzhardinge,
who believed the quality of survival was of importance. They
helped me do further training in neonatal pathology that led to
co-authoring a book on hemorrhagic and ischemic lesions in the
perinatal brain. 3 A further research year led to the first published
use of cranial ultrasounds to diagnose bleeding into the brain
of premature babies. 4 For the first time we could do sequential
scans, in the NICU, without sedation or radiation.
As I worked with CUS and CT scans, we diagnosed more brain
problems, but we could also watch as some babies recovered
and in Follow-Up Clinic we found many happy surprises.
DD: What would you like for parents to know about this type of
recovery?
KP: The type and severity of brain damage in the NICU varies
with the age at the time of injury. Spontaneous brain recovery
at least takes 3-4 years. We know that some babies recover
well. In a recent study, over 80% of babies with a Grade III and
close to 50% of those with a Grade IV bleed were cognitively age
appropriate and free of any sign of cerebral palsy at 2 years. 5 The
results for term-asphyxiated infants, treated with modern care
are also improving rapidly. This data is discussed is detail in my
book.
DD: What should NICU professionals revamp in their treatment
plans to help with this recovery?
KP: As a start, I would suggest that the medical and nursing
staff do some in-service updates about what we now know of
the current outcome data after bleeds, PVL and HIE. The major
adverse outcomes are cognitive impairment and cerebral palsy.
It is important that everyone is on the same page when talking
with parents about these significant events. Up to 60% of children
with CP will walk independently and a further 20% will do it with
a cane or a crutch. 6 Significant speech and cognitive delays are
more common in babies with the most severe forms of CP and
overall it is found in less than 20-25%.
Children at risk can be identified early and there are some
studies that suggest we should be offering help as soon as the
baby is stable. 7 I believe Follow-up starts in the nursery. As soon
as a child is diagnosed with CP, massage and gentle stretching
are recommended. Why not start earlier? The NICU studies have
been done, all we need to do is follow the data. 8
All change, particularly big change, starts with the recognition
that change is necessary. I hope my book will start the
conversation of how we can maximize neuroplasticity and
minimize maladaptive habits in the early years. Small changes
neonatal INTENSIVE CARE Vol. 29 No. 4 • Fall 2016 39