I have worked with many children in my career in child welfare,
all of whom hold a special place in my heart, but in the summer of 2008 I held
a 3 month old baby, who impacted my life in ways I never imagined. That
summer I was appointed as the CASA for a 3 month old (who will be referred to
as "Baby" throughout the rest of this story) who was in the system
due to Shaken Baby Syndrome/Abusive Head Trauma (SBS/AHT). I had
previously worked with infants, but did not have a history working with
SBS/AHT, and since we knew from the beginning it would be a very involved and
difficult case, as the supervisor I took it on myself. At the onset of
the case, the infant was life flighted to the closest major hospital with
diffuse cerebral edema (swelling of the brain), sub-arachnoid hemorrhages
(bleeding on the brain), pre-retinal hemorrhaging in both of eyes, experiencing
seizure activity, was placed on a ventilator in a vegetative state upon arrival
at the hospital, given a critical/unstable condition, with hospital staff
stating his condition was not likely to change. Baby was hospitalized
for approximately three weeks. Upon discharge Baby was breathing unassisted,
but was considered to be blind, deaf, had muscle rigidity on the right side of
the body, a severe seizure disorder, and had a g-tube for feeding. All of
these things continue to be true for Baby.
The next several
months following Baby's initial discharge from the hospital, were filled with
appointments with specialists, a lot of time spent in hospitals and doctor's
offices. I met neurosurgeons, pediatric neurosurgeons, retina
specialists, g-tube specialists (I'm sure there's a different name for that,
but I don't know what it is); if it had anything to do with the brain I met
that doctor. On a side note, during this time, out of all the
neurologists I met, which was about 3, I determined they are such brilliant
doctors it doesn't leave a lot of room for a fantastic personality, (sorry if I
offended any neurosurgeons who may be reading this!). I also need to
note, I was not doing this on my own, far from it. At the time Baby came
into foster care, I had a good friend who was the supervisor of our local
foster care agency at the time, and she worked the case for their agency.
We were lucky to be able to do this together in the beginning, when
everything seemed to still be so unknown and undeniably scary. We went
into every appointment with our brave faces on, but for me at least, inside I was
in knots wondering what new dismal outcome we would be told today. There
is one appointment that will never leave me. We were seeing another
neurologist, this time a follow-up appointment. The doctor came in,
examined Baby, and told us it was a miracle Baby was still alive, most children
with this amount of trauma would have already died. The doctor
described Baby's brain injury to us as “the brain is falling away". Due to
the damage suffered, Baby was left with 1/4 of a brain. The doctor then went on
to tell us Baby's life expectancy could not be determined, he had seen children
only last a few months or on the flip side a case where the child lived 10 plus
years with this type of trauma, but his best guess for Baby would be 3 to 5
years, with no progression from the current state. Before this
appointment, no doctor we had seen had ever put a "number" on Baby.
That moment, holding that child and hearing a time frame on life, will never
leave me. I felt like I couldn't breathe, but had to continue to be the
professional skilled at handling this type of news. I left that
appointment, got in the car, and cried. Cried for the child who had been
born completely normal and had life altered and shortened due to abuse, cried
for the child I had already grown so attached to, who may not be with us for
too long, and cried out of sheer exhaustion of hearing bad news on top of bad
news at every appointment we attended.
As the case continued there were more hospitalizations,
surgeries, more doctor appointments with specialists, more in-home care
professionals (Baby qualified for daily in-home nursing care), and more
medications added on to an already lengthy list, at one point I believe the
daily medication list was over a dozen different medications a day. Along
with in-home nursing care, Baby also received Infant Child Development Services
which consisted of occupational therapy, physical therapy, early childhood
development, speech therapy, and vision therapy. I would be lying if I
said I wasn't skeptical of what vision services would be able to do for a child
who has been found to be blind, or what speech therapy would do for a child who
will always be non-verbal, or what physical therapy could do for a child with a
seizure disorder, feeding tube, and 1/4 of a brain. It's not that I did
not want those things for Baby, I just believed what the doctors were saying, and
progression was not likely. I also need to say when all these services
started, Baby had recently been placed in a third foster home, an amazing
family, allowing me to come and observe these services while they were taking
place in their home so I could get a better understanding of what they would be
working on with Baby.
As the months
stretched into years I became more and more captivated and amazed by this sweet
fighter of a child. Baby continued to amaze us all by beating the odds.
As Baby continued to receive services from all agencies involved, we
began to see progress. I can't even begin to list all of the exercises
and equipment used to help Baby. In the beginning it was a struggle to
watch because the services seemed to bring so much physical pain, especially
during physical therapy, but the end results were Baby being able to sit
unassisted, which was a major feat when it first happened. The next big
accomplishment was being able to bear weight when held in a standing position,
with assistance, but the biggest accomplishment was when Baby took some steps
while in the walker (Baby does not have a normal walker, the walker comes with
a harness to strap in for safety because Baby does not have enough body control
otherwise). After someone physically picked up and made a step with
Baby's feet a few times, Baby was able to mimic the behavior with a couple
steps. Baby cannot walk or stand unassisted, is wheelchair bound, but the
fact Baby has even progressed to taking steps while in the walker is not anything
I ever thought would be possible.
Baby can also take some food by mouth now. While the
majority of nutrition comes from the feeding tube, Baby can eat foods that are
the consistency honey, anything of a thinner consistency, there is a great risk
of aspirating. I previously mentioned the muscle rigidity on the right
side, this is due to the left side of the brain being gone, the right side does
not move much, and Baby's hand is almost always in a fist. In order to
help loosen this side up, Baby now receives Botox injections every few months
(not just for Orange County housewives anymore!) which helps loosen the muscles
giving more consistent movement.
With every ounce of progress made, one major medical concern
remained, and that was the amount of seizure activity. Baby suffers from
a seizure disorder and it seemed with each passing month the seizures became
more and more frequent and more and more painful. At one point Baby began
having seizures that presented as long fits of crying, and it was not just
regular crying, it's the type of crying where you know there is pain behind
those wails and tears, and with a child who is non-verbal, there is nothing you
can do to soothe them but try to remain calm yourself and keep them
comfortable. Another moment in this case that will never leave me is when
I was holding Baby at one of my visits and one of the "crying
seizures" took place. I managed to keep it together while it was
occurring, the seizure lasted for several minutes, but when I left that day and
got in my car, I just cried. It was obvious to all of who had witnessed
these seizures they brought severe pain. In order to help with the
seizure activity Baby went to see another new pediatric neurologist, who the
foster family really respects, who prescribed new medications to help with the
frequency and aggressiveness of the seizures. While the downside of the
increased medications are Baby sleeps a lot, the flip side is the seizure activity
has decreased significantly and I choose to believe this means Baby is in much
less pain on a daily basis.
As the years went on, Baby continued to grow, and although Baby's
health still remains fragile, the progress made is nothing short of remarkable.
I feel incredibly blessed to have been a part of this child's life; the
resilience is something to be witnessed. Baby doesn't know the odds were
supposedly insurmountable. Baby was never supposed to be able to sit, or bear
weight, or take food by mouth, or connect with caregivers. Baby doesn't know
the odds of survival, so Baby learned, and grew, and continues to live.
I was fortunate
enough to work Baby's case as the CASA for the duration of time in the court
system, which was 4 years. I previously mentioned when Baby began
receiving all intensive services a move had just been made to a third foster
home. Baby has remained there since that time and in the summer of 2012
there was an adoption finalization hearing, and they became Baby's forever
family. There is no doubt in my mind if it were not for the adoptive
family, who took Baby in as their own, from day one, and provided consistency,
advocacy, and love every day, Baby would not have made such remarkable
progress. They are amazing people, I could not be happier they are the
forever family.
I wanted to write
this story because it's a story that needs to be heard. SBS/AHT is the
leading cause of child abuse deaths in the United States, infants from birth to
4 months are the most vulnerable, and crying is the greatest risk factor (http://www.cdc.gov/concussion/HeadsUp/sbs.html).
Unfortunately, we don't know for sure what exactly happened that set off
either of Baby's biological parents causing the trauma, and we will never know,
that's something they have to live with, but we do know the trauma occurred at
two months, which falls into the statistics. The other very important
point that needs to made here, is SBS/AHT is 100 % preventable.
Preventable. Having a newborn is trying, it's frustrating, it's
exhausting, and it's normal for your baby to cry, for no reason, and there are
perfectly acceptable things for you to do to take a break from your
inconsolable baby. Programs like the Period of PURPLE Crying exist as
preventative programs to give parents resources and safe options to prevent the
tragedy of SBS/AHT.
In working with
Baby, I changed as a worker and became a better person. I became set on
helping to prevent future children from suffering the same trauma. SBS
prevention efforts in our community became a big focus to me, and we were able,
with a lot of work from collaborating agencies, to bring the Period of PURPLE
Crying program to our local hospital and community agencies. Any time one
of my friends or friend of a friend, or anyone I was remotely aware of had a
baby, I badgered them with information about the normalcy of crying, the PURPLE
program, checked up to see how they were doing being new parents, to the point
of utter annoyance I'm sure. Honestly I'm surprised people still answered my
phone calls! Also being a person, with little patience, (I heard the
saying, "Patience is a virtue" a lot in my life), Baby taught me with
patience great things come to you, and to never doubt what may be possible.
Watching Baby grow and bonding with this child, this child who has never
seen my face or heard my voice, but does know my touch, is one of the greatest
experiences I have had in my tenure as a social worker in child welfare, and
not one I will ever forget. Baby inspired me, taught me to be a more
positive person, to be a more loving person, a more hopeful person, and I will
be forever grateful.
*It should be
noted there are multiple agencies, social workers, teachers, attorneys,
doctors, judges, who played a major role in Baby's case and subsequent
permanency. It is not my intention to leave any of those individuals out
of this story, there are just too many to name. A huge thank you goes out
to all of those who worked on Baby's case, you know who you are.
**It should also
be known I was given permission by Baby's adoptive family, to tell this story.
I hope I did it justice.