I am a NICU nurse and my husband
is in the military. We have a three-year-old son,
Connor, who is what some may call a "strong-willed"
child. He is vibrant, energetic, and I'm afraid
that it is my own fault that he seeks attention at almost
every waking moment. I am one of those parents
who believes in holding your baby all of the time, letting
them fall asleep on you before bedtime, and providing
lots of interaction and activity during the day.
It's amazing how God "trains" you for His
will. Being a NICU nurse and having the knowledge
that sometimes life takes an unexpected turn when it
comes to having a baby, I always knew it was possible,
but never really thought that I would be bringing my
work home with me. Looking back, though, I did
always look in amazement at these parents who were so
loving and faithful to there babies who were having
a more challenging start in life. They would spend
endless hours at their infant's bedside reading, praying,
and caring for them. I could only
feel sympathy for them and share their hope with them.
At that time, I did not know what it would be like to
go through something like that. In addition, I
was raised a cradle Catholic, supporting pro-life
in debates among peers, but never having been in the
situation, I felt like I lacked some credibility.
What would I really do in a difficult situation if faced
with the decision? Like I mentioned before, God
is with us, training us, molding us to do His will.
I never could have put the puzzle together that God
was preparing me for something that would
challenge me to the utmost of my ability, that would
put my faith and devotion to the test, and that
would ultimately make me a better person, give my life
more meaning, and teach me about true appreciation
for the simple things in life.
I was 16 weeks pregnant when the
nurse called to tell me that my triple marker screen results
indicated that Caleb could have Trisomy 18. She
was pleasant and nonchalant on the phone and ended the
conversation with a "have a nice day."
I hung up the phone and buried my head in my knees.
I wanted to go back just 5 minutes in time
to when I was having a happy, healthy pregnancy and
all was right in my world. But like I've heard
it stated before, the bad thing had already happened.
I couldn't go back, all I could do was pray that
the test was wrong. I had friends who had there
tests come back indicating an abnormality and their
children were born perfectly healthy. I prayed
that it was a false positive, but the worry was still
there and very real. Two weeks later, we had a
more intense level ultrasound at the high riskOBclinic.
The doctor reviewed the scan from toe to head.
She was looking for physical abnormalities such as clenched
fists to help confirm the diagnosis. As she scanned
Caleb's body, she said he looked beautiful...until she
came to his head. We saw her give an honest and
sympathetic frown and asked her the obvious question,
"What's wrong?" As I squeezed
my husband's hand, she began to tell us that Caleb
had congenital hydrocephalus and that it was severe.
Where brain should have been, there was a build up of
cerebral spinal fluid, which had nowhere to go.
The pathway from the brain down the spinal column
was for some reason blocked causing a large amount of
CSF to suppress brain growth and development.
The tears rolled down my cheeks as I lay there on the
table. I couldn't believe that this was happening
to our family. After regaining composure,
we proceeded to the genetic counselor's office.
There she went over the probability for having a child
with Trisomy 18, possible physical abnormalities,
and life expectancy. To add insult to injury,
she then explained the possible effects of congenital
hydrocephalus ranging from mild to severe developmental
and cognitive delays as well as other problems
that just seemed to drift off in the room.
I was watching her talk, but was no longer listening.
I kind of glazed over, trying to find some peace
in the middle of all of this negative information
that was being shown to us in graphs and ratios.
The next thing I heard her say was amniocentesis.
This would be done to "confirm" the Trisomy
18 result. Well, the wondering of what I
would do in a difficult situation regarding the decision
to terminate a pregnancy ended at that moment.
My husband and I looked at each other in agreement and
explained to the counselor that in no way would we risk
a miscarriage and that irregardless of whether
Caleb had Trisomy 18, he was our baby and
we would love him until God saw fit to bring him
home. I can honestly say that there was never
a single second when we contemplated termination,
but this is not to say that we didn't pray everyday
and all day for God to take the diagnosis away
and grant us a miracle.
The remainder of the pregnancy
was hard and full of ups and downs. It was
not a normal pregnancy and my mom and I often talked
about how it must have been so much better before
triple marker screens and ultrasounds. I waiver
between whether it may have been better not knowing
and having a happy pregnancy or if it was more beneficial
to know early on and somewhat prepare. I don't
think you can ever really prepare for anything
like this emotionally, but it may give you the opportunity
to gather information about how you can help the child
when they are born. I didn't research Trisomy
18 because I didn't feel in my heart that Caleb
had that and I left it up to my mother to filter information
about hydrocephalus because I didn't want to hear about
the "most severe" cases which is what you
seem to find when searching the internet. I went
through the grieving stages throughout the pregnancy of
being sad for my baby and my family, angry and confused
as to why this had to happen, and then hopeful that
God would answer our prayers, grant us mercy and possibly
a miracle. I developed a more personal relationship
with God because He was always on my mind.
After my first OB reiterated
the grim statistics, probabilities, and not so inconspicuously
recommended an abortion by referring to it as an epiphany,
my husband and I returned to the high-risk doctor who
had sympathized with our situation at the ultrasound.
We explained to her that we only wanted to participate
in tests that posed no risk to the baby and that
were only beneficial to the pregnancy. We
were blessed to find anOBthat would support us in our
decision and who openly admitted that she was open to
God's possibilities for her patients. She
once told me that she was constantly being proven wrong, agreed
that medicine was not a perfect science, and stated
that the day she didn't learn something new in her field
would be the day that she no longer wanted to be a doctor.
We collaborated on a plan of care for the pregnancy
and the delivery and, after consulting with our priest,
determined that an amnio would be performed at 32
weeks gestation when the baby would be okay if
delivered early. The only purpose of the amnio
was to see if Caleb had Trisomy 18. If the
result were confirmed, then we would not do surgery
for the hydrocephalus, but provide a loving environment
at home for as long as he was with us. (We
were told that with Trisomy 18, babies did not usually
live longer than a few days after birth. Since
then, I have heard numerous stories to the contrary.) God
had heard our many prayers and the results came back
NEGATIVE for Trisomy 18. My heart breaks
for all of those healthy babies that have been
terminated because the parents were told that there
was a "good possibility" that their baby
had Trisomy 18, 21, 13, etc.. I promise you
that God hears your prayers and answers them according
to the great plans that He has for you.
Caleb James was born in March
2007 at 35 weeks gestational age by elective c-section
as a result of severe congenital hydrocephalus.
He was the most beautiful baby we had ever seen and
this time, lying on a different table, happy tears ran
down my face. So many emotions consisting of anxiety
and hope had built up to this very moment and with his
first cry, I felt an overwhelming wave of relief wash
over me. I felt everyone’s prayers with
us in that operating room and the grim picture that
had been painted for us 4 months earlier faded away.
Suddenly, congenital hydrocephalus was just a diagnosis,
and Caleb became Caleb, our baby. I held him for
a quick second before they whisked him off to the NICU,
a place I was very familiar with but for a different
reason. He was baptized two days later just hours
before his first surgery. He had a VP shunt placed
in his head to help drain the cerebrospinal fluid, and
from that point on we have been praying for his brain
to grow and develop.
Caleb's life has been and will
be full of challenges. Nothing is guaranteed him
and every milestone and achievement is to be celebrated
and appreciated. We prayed for him to be able
to see, hear, know that He is loved, and to know God...which I
am sure they have a special relationship already.
He is now 6 months old and continues to amaze us everyday.
He loves music and when you sing to him, he wants to
see and touch everything in sight, his smile will melt
you, and we are grateful and privileged for
each day we share with him. Because his brain
has a lot of catching up to do and may have difficulty
wiring up in comparison to others, we are constantly
providing "input" in the form of interaction,
play, physical therapy, sensory integration, and basically
introducing him to all that life has to offer.
Things that may come inherently to a baby, Caleb has
to learn. Caleb has taught us so much about life....how
much of it is taken for granted and how endless its
possibilities are. All of his doctors know that
we don't care to know what his CT scans show or don't
show or to ever hear what he may not be able to do.
What is the point? Just tell us what we can do
to better his life and improve his possibilities.
According to most of their statistics, he was supposed
to be on a ventilator in a vegetative state with no
quality of life. Is that what you see when you
look at his picture?
Receiving the news that your
baby may not fit into the perfect mold that life has
taught us to expect of our children is heart wrenching
and life changing. But, it forces an inner strength,
a deeper faith to surface...one that you may not have
known existed. You will pleasantly surprise
yourself and rise to the occasion and eventually see
that your baby is a blessing and not a curse.
I have met the most amazing mothers, who have every
right to brag of patience, unconditional love, newfound
strength and commitment, and yet are the most humble
people you will ever meet and find that you are a better
person for knowing them. Our children, the imperfect,
the "differently-abled", the most challenged
are our greatest teachers. I guarantee you that
your life will not be monotonous and that it will be
made more meaningful by having a child with special
needs. You will find true fulfillment and appreciation
for what is important in life. It is the most
difficult and wonderful road to journey, but God does
not do things on accident, and He has chosen you
to be the parent of such a blessing.
I offer you my sincere empathy in receiving the
news, many prayers to lift you up in times of sadness,
anger, and frustration, and congratulations on
making the right decision and joining the league
of amazing mothers who I find I am a better person for
knowing. Remember also, that medicine is
not a perfect science, that doctors are learning something
new everyday, and that your child just may be the one
who will help teach them. God bless!
to Congenital Hydrocephalus Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.