In December of 2014, Chris and I found out we were going to be first-time parents! This was much to our surprise–especially since we practically got pregnant while I was on birth control! When I went to go confirm the pregnancy (after taking two at home pregnancy tests), the doctor looked at me and said this had to have been God’s divine plan. She knew that Chris and I had been through an array of other life issues in the months leading up to the pregnancy.

 

In June of 2014, my grandfather had passed away unexpectedly. In September of 2014, I went through a series of tests which determined I had fibroadanemos (small benign tumors) growing in my right breast as well as a lesion growing in one of my milk ducts that the doctors said put me at an increased risk for developing breast cancer. (Not to mention in November 2013 the doctors found fibroadenomas in my left breast-which are now dissolved.) In October of 2014 I had that lesion surgically removed. A few days after my surgery, my family’s dog died. And in the second week of November (and unknowingly to us-the day after we conceived) Chris miraculously survived a car accident where our SUV had turned over on the highway. So–yep–the doctor knew about all of the chaos we’d experienced and she was believing that the baby growing inside of me was truly a blessing sent to us from up above.

Over the next several weeks, Chris and I adjusted to the idea that we’d have a new little person running around our house. Chris was so excited and knew from the start that we were having a little boy. He didn’t have a way to prove it but he could feel it. His life’s dream was to have a son and he knew in his heart that that was what was going to happen. As for me–I wasn’t sure what we were having but I knew I wanted a healthy baby. I figured I could roll as a football mom or a Girl Scout troop leader. It didn’t matter to me. I was just eagerly looking forward to the day when we’d have a mini-me or a mini-him looking at us calling us “Mommy and Daddy.”

At 20 weeks and 6 days gestation, Good Friday 2015, we learned that we would be having a little boy, just as his daddy knew all along. That was also the day when we found out our son would be born with a variety of medical issues.

As Chris and I watched the Sonogram Tech roll the device over my stomach we “ooh-ed” and “ahh-ed” over seeing our little boy move inside of me. But when the doctor came out to confirm what the Sonogram Tech saw, her face was void of blood and color and she looked like she’d just seen a ghost. She told us that our little boy had multiple abnormalities and she was very concerned about us. She told us that most parents who saw the types of issues in their children that she saw in ours usually decided to terminate their pregnancy. We told her that wasn’t an option for us and to tell us what she saw. Her list was long. Extremely long. Long enough for us to sit and stare at her and ask her if she was kidding because it didn’t seem real. She said unfortunately she wasn’t kidding and that from that moment on our pregnancy would be considered high risk. She suggested that I get an amniocentesis that day so the doctors could start running tests on the baby and on me. After she told us this, she said she’d give us a minute to talk while she went to go get the utensils to perform the procedure. Chris and I held hands and we prayed. We prayed that God would protect our child, that He would protect us and that He would prove the doctors wrong.

After we prayed together I left the room and went and locked myself in a patient bathroom and got on my hands and knees and with tears running down my face and with me silently crying out to God with everything I had in me, I begged Him to save my child. I prayed harder than I had ever prayed before and when I got off of the ground I saw my tears on the gray tiles and the black caulk in between them. I didn’t know what to do but I knew I could pray and believe for our baby.

When I and the doctor came back into the room, she performed the amniocentesis on me and told me to go home and rest for the day. She then referred us to the high-risk clinic for the practice and that’s where our journey began.

After several weeks of me receiving care from the doctors at the high-risk maternal fetal medicine clinic and the baby being closely monitored and having a couple of MRI’s on his own–in utero through services at the Fetal Care Center of Cincinnati, it was determined that our little guy had a lot going on in his little body. Way more than Chris and I were prepared for. He had fluid around his brain, he was missing the coordination center of his brain (the vermis), his eyes were deep set, his ears were low, he didn’t have much of a chin, his airway was very, very small, a part of his bowel was growing into his umbilical cord, his legs were bowed and his wrists were clubbed. His brain stem also showed some severe issues. His pituitary and thyroid glands were extremely small–meaning he would not grow and develop normally and he wouldn’t have a fight or flight response…meaning a simple common cold or a jolt of regular excitement could possibly kill him. Though the doctors knew that these issues were severe, no one knew just how severe they would prove to be and our case would be on a “wait and see” basis until the baby was born.

All of our doctors and the doctors who would be caring for our son after he was born painted a grim picture. But we wouldn’t accept it. We would not internalize it. We could not bring ourselves to believe that our child–this divine little boy who was truly an unexpected gift to us, this child–who had come to us after we had just walked through so many other terrible things, this child–who was his daddy’s only dream in life and my answered prayer of being a mommy–would possibly die right after he was born. We could deal with being the parents of a special needs child. That didn’t matter to us. We knew that we would love our baby no matter what malformation or disability. We were unconditional lovers–especially when it came to our future child. But we could not wrap our minds around us giving birth to a child who would die.

Because of the medical issues, our doctors recommended that we deliver the baby at 37 weeks, instead of the regular 40 weeks. We were prepared to do that—but God had other plans. On July 21, at 36 weeks and 2 days, our precious baby Christopher Louis Jones Jr., affectionately called “Junior,” was born. He came into the world blue and not breathing. After resuscitation and having a breathing tube inserted in him, he was immediately transferred to Cincinnati Children’s Hospital Medical Center’s Newborn Intensive Care Unit (NICU).

Because of our son’s head size due to the fluid being around his brain and his enlarged ventricles, I had to have a classical cut (T-cut on my uterus) and a bikini cut C-Section. So, while our son lived in the hospital for 10 days, I stayed in the hospital where I gave birth for four and a half, recovering. Which meant my husband and family members were responsible for getting me back and forth from the hospital I was a patient at–to the hospital where our son was a patient. Every time the over the next 10 days, after multiple tests, exams and doctor consultations, it was determined that everything that the doctors saw in prior sonograms and MRI’s would prove to be true. In addition to everything else that the doctors already saw, it was determined that our little boy didn’t have adrenal glands, the glands that regulate every organ, every tissue and every organ in a person’s body. And his brain stem–the part of a person’s brain that controls their breathing, their heart beating, them swallowing and pretty much living without them realizing that that’s what they’re doing, was severely and abnormally underdeveloped.

We met with doctors several times every day in the hospital and in the words of Chris, we saw every division at the hospital that ended in “ology.” Endocrinology, cardiology, neurology, neonatology, pulmonolgy, and several others. Chris made the nurses and doctors laugh and he was a trooper. Every time the doctors said something else was wrong with our son, he would go home and record his voice speaking words of life and encouragement to our son and he would put those words on a CD. So every time anyone entered our room, the first thing they heard was Chris’ voice softly but booming through the CD player that sat on the ledge right next to our baby’s head…”You are healthy in the Name of Jesus. Your heartbeat is regulated. You are the righteousness of God. You are loved.”

 

Finally on day number nine of Junior’s life, the doctors told us that we had some very hard decisions to make about the future of our child’s health. They shared with us that in order for him to live, he would need to be connected to a ventilator, a feeding tube and a suction machine for the rest of his life. The doctors also made it clear that, even if he were connected to these machines, he could still die.  were surprised that he had lived beyond 36 hours.

Based off of this information, we knew that his quality of life would be poor. After carefully considering our options, we decided it was in our son’s best interest to remove the ventilator and let him go peacefully to live with Jesus. On Friday, July 31, at 7 pm, with our permission, the doctors carefully placed our son in my arms and took his breathing tube out as he peacefully passed away. We knew that heaven was a better place for him, as there are no ventilators, tubes, machines, X-rays or needle pricks there. And the crawl space is infinite for a little boy who is on the move!

In the short time since our son passed away we donated his brain, brain stem, heart and part of his lungs to research. I donated all of my breast milk to the Mothers Milk Bank of Ohio, which serves seven different NICUs across three states. People can make a donation in our baby’s memory to the Cincinnati Children’s NICU; donations will help the families of NICU babies as well as the babies themselves. We also started the Angel Baby Network, a support organization that helps families as they walk through the passing of their child. We have met with the Cincinnati Health Department Fetal and Infant Mortality Review program to help them improve the care that is provided to families across the region when they have babies. And we work with Cradle Cincinnati, which focuses on reducing infant mortality in Hamilton County.  We do not believe that this is all God has in store for us.

We learned that our little boy passed away from a genetic defect that we didn’t know anything about. The defect is so rare that only a handful of other children in the world–about three or four–have ever been studied as having it. With this knowledge, we will be able to make decisions about the future of our family. And since we were told to wait 12-18 months after we had our son to get pregnant again (due to my C-section cuts) we’ll keep on helping a lot of other people until it’s time for us to have another child…and even beyond then.

If we had a choice between our son dying and helping a lot of other people or us being able to bring him home, we would have chosen the latter. But God has us in our situation for a reason. We may not completely understand it, but we will make sure that we make the best of what happened and that our son’s purpose of helping others is fulfilled. We will always love our little boy, and he will always be our champion.