Caleb with his dad

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!   

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-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.