Jesse's Story, by his mama

Written by Diana Quinones

2015 was a hard year for me. I lost my father in January 2015, when he unfortunately lost his battle with cancer. However during that time I was watching him wither away, I discovered I was pregnant. This was my little glimmer of hope, something I was so happy about. As my father was lying on his death bed, I whispered into his ear, “Your going to be a grandfather again.” He opened his eyes, lifted his eyebrows whispered, “I love you.” 24 hours later he was gone.

All of my family members were ecstatic about our baby news. This was our peace during the storm of my father’s death. My husband and I were expecting our first baby! We couldn’t be any happier during the grief of my father leaving this earth. I had my first check up on February. I was indeed pregnant given the due date of September 18th, 2015.

Everything was going fine. Every appointment I heard the heartbeat, every appointment I looked forward to, just to see my baby grow. Until my last appoint in May. This is when my world came crashing down. My glimmer of hope was flickering.

My midwife came in with the results of my anatomy scan. I was about 22 weeks pregnant. She had a concerned look on her face. She told me they found an anomaly, and she wanted me to see the fetal specialist. I was experiencing this all on my own. In a different state from my family, but thankfully my in-laws lived in Los Angeles, two hours from San Diego where I was living at the time. I was to stay with them until we figured out what was happening with my baby. I think this was the most dreadful part of my journey, being poked and prodded by doctors as they figure out what is wrong with my baby. I finally got to see my fetal specialist; she began to do an ultrasound for me. She was quiet the entire time; taking pictures, stilling images, listening to his heartbeat. This had to have been the longest day of my life. She began showing me what she was looking at. My son had a neural tube defect, an encephalocele. His cerebellum was growing outside of his skull, the words, “not compatible with life after being born,” were mentioned, and they wondered if he would even survive the nine months inside of my womb. She also said his heart was not in the right place, I would need to see a fetal cardiologist, however what was concerning was the degree of his encephalocele.

We learned he would not survive. I was advised to terminate. However in the state of California termination after 24 weeks is not possible, so I had two weeks to figure out if I wanted to keep my baby or carry him to term, despite the prognosis. I had to tell my husband the sad news via email, as he was somewhere in the Pacific Ocean. He was devastated. I then saw the fetal cardiologist. Even more bad news, my baby had a diaphramic hernia, he was also diagnosed with DORV (Double Outlet Right Ventricle). Which basically meant his little body would have to undergo tons of heart surgeries right after birth. However, his cardiologist said he wouldn’t even be able to undergo surgery with the severity of his encephalocele. It was just one horrible diagnosis. One right after the other.

Our families were devastated. My mother had a peace and calm reaction. She is such a strong woman of God. She had the most calming words to me. She said, “Everything is God’s will, you are a woman of faith! You know in your heart you cannot terminate this pregnancy. If he survives, he survives, and if he goes to heaven, you will see him again someday. He has his grandpa with him.”
My husband and I decided I would carry to term, despite the prognosis. I would stay with my in-laws until September; my husband would be home at that time anyways. We prayed for a miracle.

Those four months were the happiest and saddest times of my life. My baby grew inside of me. He kicked and moved. Whenever I wouldn’t feel him, I would be scared. “Is he gone?” “Did he die inside of me?” But then he would punch or kick me, letting me know, “No-mama, I am still her.” I could then breathe again. My belly got bigger, he measure smaller than normal due to his neural tube defect.

My family came to visit me, we had full days on the beach with my baby inside of me. We were enjoying our time with him, no matter what the doctors said.

Doctors ran all sorts of genetic testing. However everything came back normal, this wasn’t a genetic disorder; they said it was a “strike of lightening.” Why did God choose me for this “strike?” “What did I do to have my baby this way?” I am still asking these questions to this day.

September rolled along; my husband flew back to California to be with me; to be my rock during the birth of our son. I was to be induced. I was in labor for about 48 hours. My son came at 10:30 at night on September 5th, 2015. He was born not breathing. It was a stillbirth. They swaddled him. I got to hold him, everyone in my family held him, and what broke my heart the most was seeing the tears in my husband’s eyes. The heartbreak. Here he was saying hello and goodbye to his little boy. Our son.

I held him tight, exploring every little piece of his body, drinking him in. I didn’t want to forget any inch of him. He had his father’s cheeks, a head full of curly black hair, his appearance looked so peaceful. To me there wasn’t any bit of defect; his was perfect in my eyes. He was mine. I think September 5th will always be a day of happiness and sadness for me. It is a day that will forever be in my heart. The day I died, and the day that I also came alive.

My husband and I decided we would live for our son. Live life for the life he was denied. Every step we would take would be for him. I now know why God gave this to me, so I could be a voice and inspiration to women who are going through the same thing. To choose life! Not terminate it. Give your baby a fighting chance, despite what the doctors say. We now are in Japan and we are taking every bit of it in. Exploring its wonders. Letting the world know, Jesse Alberto was here! He may not be on this earth, but he is here! We are living through him. Don’t get me wrong, there are days where all I want to do is curl up a weep. Feel sorry for myself. I look at mothers with their babies, and wonder why that could not have been me. But who am I to question God’s will? I still have life and everyday I pray that he blesses us with a rainbow baby but until then my husband and I have been closer than we have every been, we hold each other’s hands in this pathway through grief. We smile, we cry, we laugh, we pray, but most of all we live. Living for our son, living for Jesse Alberto Castillo.

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Diana Quinones is an educator, and wife to her wonderful husband. They are presently living in Japan enjoying life to the fullest.

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