Faces of Loss, Faces of Hope

Amanda

Mom to Fernando Michael Phillip

August 24th, 2004

Rancho Cucamonga, CA

I was blissfully pregnant for the first time at a young age of 23 years. It was so easy. I was glowing, feeling great. I wanted to get pregnant and it was granted to me with ease. Who knew that within 2 months I would be waking up in a pool of water, realizing that my dreams had been shattered and that there was no turning back...

At about 17 weeks of pregnancy I had decided to change obstetricians so I could deliver at the hospital of which I worked. During the first ultrasound with my new doctor, he discovered that my gestational age was incorrect and that my pregnancy was not as far along as I had thought. He ordered a second AFP test due to the invalidity of my first one because of my gestational age. Not even a week passed when I received the call that the results were positive for a neural tube defect. Denial struck. I immediately sought comfort in knowing that there are high rates of false positive results, primarily due to inaccurate due dates. I followed protocol and was scheduled with a perinatologist for a detailed ultrasound.

My husband and I said a prayer before we walked into the perinatologist's office, still gripping the hope that my due date was miscalculated. As the doctor performed a detailed ultrasound, I could slowly feel the weight of worry being lifted off. I remember him saying that everything looked great! We found out we were having a son and suddenly the pregnancy became more concrete. Moments before the perinatologist was finished, a second of deathly silence was followed by an ominous, "Oh, wait." My heart sunk. I could just feel it. Denial still surrounded me, but I was struck with horror. The doctor showed me the image of my son's head. I could clearly see that it wasn't round, as it should be.

He explained to us that our son had a Posterior Occipital Encephalocele. Confusion washed over my face as he explained in detail that a portion of bone was missing from the base of his skull, allowing his spinal cord to protrude. It was like I wasn't there at all, but on the outside, watching this horrific scene unveil. The doctor gave us some time in his office for us to gather our thoughts. My husband and I cried together, that's all we could do. Thoughts of doubt circled in my mind. They were clearly wrong. How could this be? I am so young, I did everything right. When the perinatologist returned, he handed me a business card of a clinic that performed pregnancy terminations, informing me of my option. I looked at him in shock. Why on earth would I rid of my child? We left that day with little hope, not knowing where to turn or how to proceed.

Days went by along with endless hours of research. I wanted to know the ins and outs of my son's condition and no one had definitive answers. I remember coming across one father's blog who had a daughter with a less severe encephalocele than my son's, stating that his daughter had smiled for the first time at the age of 9. I wailed as this truly sank in. I was hopeless. I sought second opinions and even contacted centers in San Francisco where risky fetal surgeries were performed. I was ready to go the distance for my son. Yet at every turn, there was a doctor telling me that I was young, I would have other pregnancies, suggesting that I terminate. After weeks of dead ends, the results of a follow-up ultrasound had come back stating that brain matter was found within the encephalocele.  My son was going to die.

Through all of this, I was literally having an out-of-body experience. As if it really wasn't me, but I was watching a horror film. Soon he became the diagnosis, not a baby, but something that was wrong. He was a road block to my ultimate goal of a healthy child. Despite all of my efforts, he had worsened. I was reluctant, but ultimately followed the advice of each medical professional I had come in contact with. I convinced myself that the longer I allowed this to continue, the longer it would take me to get the child I had hoped for. I told myself that I was simply taking Fernando off of life support, a decision that unfortunate parents had to do every day. I was afraid. I decided to terminate.

Bound by my insurance, my only option was to go through Planned Parenthood. I knew that if I drove into the parking lot to find anti-abortion picketers, I would have run away. With no other option, I proceeded. I called to set up my appointment and the short conversation with the nurse on the phone quickly turned sour when she found out I was 24 weeks. To my surprise she told me, "We do not birth babies here." My jaw dropped as I began to sob and I immediately hung up the phone. How could this callous woman who had no idea what I had been through say such a hurtful thing to me? My insurance adviser jumped through hoops and found a clinic that performed late-term terminations solely for cases such as mine. The professionals that worked there were my saviors at the time... they understood.

I was put to sleep for the first procedure, one in a series of many that were to span over the next several days. When I woke up from the anesthesia, I was lying in a pool of water. Completely disoriented, I was told that they would be taking him then, that I was already 5 centimeters, and they had broken my water. I immediately knew that I had made the gravest mistake of my life, a regret that I would live with forever.

When I saw my son for the first time I was in awe of what God had helped me to create. A baby! Not a diagnosis, not a problem, but a child! He was beautiful!

I exhausted my time trying to "fix" Fernando instead of taking the time to enjoy the gift God had given to me. After all, He had answered my prayers... He gave me a child. One that I longed for, dreamed of, and love. If only I had cherished my son, if only I had taken the time to bond with him. I look forward to the day that I will meet my son again and hold him forever...

Happy 6th Heavenly Birthday, Fernando.

Amanda is the Co-Founder of www.walktoremember-ie.org

You can contact her at Amanda@walktoremember-ie.org