July 9th, 2019.

The day that changed our lives forever. 

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After a few years of wedded bliss, DeVontae and I decided that it was time to grow our family. It fit into our 5 year plan. We are and always have been type A planners. We know when and how we are going to get things done – no alternate routes needed. We had every detail of our lives polished and ironed out. It was this July day we realized life can be completely out of our control – no matter the preparation; we are completely on God’s time.        

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I had the most amazing pregnancy. It was nothing short of being picturesque and completely euphoric. I was loving every phase of our tiny miracle. Our 20-week ultrasound was perfect and our first child was growing exactly as expected. I had high energy and not an ounce of sickness. After a few more perfect weeks of pregnancy, we noticed that I had gained about seven extra pounds in two weeks. Our midwife recommended a final, routine ultrasound scheduled at 37-weeks to see where the extra fluid might be coming from.      

While the ultrasound tech scanned our angel she started asking questions and ordering demands such as, “Have your previous ultrasounds been done here? Flip to your right. Flip to your left. I’m going to run these images by the doctor.” Being in healthcare myself, I knew what these words meant. She had seen something. We sat in silence and waited for the tech to come back in, only to see the doctor had come back with her with a chilling solemn gaze. 

 

The doctor’s first words to us was that they had found something very serious and our baby, our precious miracle, had only a 30% chance of surviving whatever this was. I will never forget the heartbreak that came over us at that moment. An indescribable range of emotions that only parents who have been in our place could ever possibly fathom. To have our five year plan, our perfect timeline, a healthy and beautiful pregnancy, all come down to this moment that changed our trajectory forever. 

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The doctor informed us that our next steps would be to have an echo done on the baby’s heart in the morning at a hospital that would be able to accommodate a condition like this. My midwife had called me and left a message saying she recommended we packed our bags just in case they decided to proceed with anything.

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The next morning Devontae, myself and my parents loaded up and headed to the hospital to have the echo done. During the echo the doctor informed us on a scale of 12, our baby’s heart was functioning at a 4 and he was fighting very hard.  She consulted with other doctors and they decided that it was best to get the baby out as soon as they could. We were taken over to labor and delivery right away where they put several monitors on before ultrasound came in again to get another full work-up of our baby. During this time, several doctors were coming in and introducing themselves. This was not where we had any prenatal care done so EVERYTHING was new and scary. There was an overwhelming feeling of chaos and confusion. 

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On July 11, 2019 I was induced and over the next few hours, after monitoring baby’s progression and all I remember was being soul crushingly scared of the unknown and the future. The doctor came into the room the next morning around 5:45 AM and stated they did not like how our baby’s heart was trending. That’s when we were told, “We need to have a birthday today.” We were immediately wheeled off to the OR where we would meet our sweet little warrior following an emergency caesarean section.

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Our purpose for life changed forever when DeVontae, proudly beamed to me “It’s a boy!” Our little Roman was stable enough at that time that the nurses were able to carry him over to us where our eyes met for the first time. This moment is one that I will hold in my heart until our eyes meet again in heaven. 

The nurses immediately stated “we need to get him to NICU” and he was rolled away just seconds after meeting our baby boy for the first time. Due to everything he needed to have done and the difficulty he was having breathing, I was not able to see Roman until hours later. I was taken back to my room to start recovering; However at this time, I felt numb to everything. 

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Over the next 21 days, it would be an absolute rollercoaster of minimal good days and an excruciating amount of bad days. Roman was diagnosed with the Vein of Galen, a rare fetal anomaly cerebral vascular system and represents 1% of the abnormalities. The Vein of Galen is rarely diagnosed until the third trimester. At just five days old, Roman was scheduled to have an operation to shut down the aneurysm in order to minimize the pressure of blood flow. This procedure lasted 6 hours and our only updates were looking for his bed number on a computer monitor to check the progress. These six hours were comparable to six lifetimes. The doctors stated they were able to stop about 70% of the blood flow in his brain. We were hopeful it would ease a lot of pressure on his heart.              

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After another week and a half passing with no improvements on his heart, the doctors recommended going back in to see if they can shut down any more of the aneurysm. Again, another 3 lifetimes passed during his second procedure. Although we were told we had to wait to see how his body would adjust, we remained so optimistic on even the smallest amount of progress. We relished in the moments our son was able to be less sedated. To be able to see him open his eyes, wrapping his hand around our fingers for the first time.  

A large care conference was called where we heard from all the doctors involved. We were adamant about not giving up because we knew our baby was a fighter. We pushed for the 3rd procedure to try to stop the aneurysm. 

The night before the 3rd procedure, Devontae and I decided we would stay with Roman in his room. Around 1:30 in the morning, the doctor and his team were adjusting medications when the doctor stated “He is staying one step ahead of me.” By 4am the team was back in Roman’s room, the doctor turned to us and said, “I believe he is passing.”

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 I remember looking at the heart monitor and watching it gradually decline from 90-80-70-60…That’s when the nurses took Roman out of his bassinet, laid him in our arms, for only the second time, and where he would take his very last breath. 

We were told many times what a miracle Roman was, is and what we know will continue to be. The size of his aneurysm was not compatible with survival and yet, he fought every single day. His heart pounded, deep inside my tummy for what we believed to be a healthy 37 weeks and then for an additional 21 days on this earth. Our baby boy fought so hard to meet his mommy and daddy so that he could feel our love every second of every day. Roman Von Brooks’ work is only yet beginning on this earth, with an eternal kingdom next to Jesus at his little fingertips.

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