Christian’s Story

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Christian Thomas James Cobb’s purpose on earth may never be truly known or its extent truly appreciated, but his memory will forever be immortalized through Christian’s Purpose. If you were lucky enough to meet or spend time in the NICU with Christian, you would feel the same thing everyone did who experienced his presence, a special and unique aura surrounding his entire existence.

Everyone who spent time with or cared for him came away with the same feelings of overwhelming strength, love and faithfulness—something that could never be put into words, but touched the hearts of everyone who was personally involved with his care, or had heard and followed his story. To say that hundreds of people were praying and following his story would not be an exaggeration. The overwhelming sense of urgency, love, prayer, and faith surrounding this tiny angel was what one could only call a religious experience. I don’t just say this as a loving parent, but as someone who witnessed the miracle that his short stay on earth (a mere 6 days) brought to everyone around him. Christian has touched the lives of so many, and he continues to do so to this day. His memory and purpose will continue to touch lives and be a source of strength, faith, and love to everyone. This is, and always will be, Christian’s Purpose!

On April 8th, 2017, the great news came to me via my beautiful and loving wife, we were pregnant! She couldn’t wait to tell me, even though in two more days it would have been my birthday, and this was the best present anyone could ask for. Everything was great with all of our prenatal appointments, and things couldn’t have been better. The excitement was a blessing to our small family. Our five-year-old daughter took the “I’m-a-big-sister” photo, and it was announced to the world via social media, to family and friends, and to anyone who cared to see. But God had a bigger plan for our family—one that we could never have fathomed. 

Our 22-week ultrasound came quickly, and we decided to do everything the old-fashioned way: we didn’t want to know the sex of the baby until birth. Our appointment would just be a regular checkup then, one to make sure things were growing and developing correctly. Little did we know that we were about to get some of the worst news a parent could ever receive. There was a problem during the ultrasound: it was determined that the baby was developing a omphalocele. This meant that some of the internal organs were developing on the outside of the body. We were told that the liver and stomach were outside in a sac. This was not an ultra rare occurrence, but the extent of his deformity was unusually large, something that not only worried the doctors but completely devastated us as parents. We immediately went home and did as much research as possible. We were given the option to terminate the pregnancy, but after proper research came to the decision that we were fully prepared for the long road ahead. This meant a prolonged stay in the NICU and multiple surgeries, but our beautiful baby could grow up to be a perfectly normal child. This meant we had to be fully prepared, mentally as well as financially.

After proper research we came to the unsettling fact that there was absolutely no help out there financially for families with babies diagnosed with this condition. Yes, we were eligible for financial assistance through the hospital, but this in no way covered loss of wages on my wife’s end, special orthopedic car seats and accessories, or the extra testing that accompanied all of these issues. We were completely overwhelmed, but determined to do all we could for our little angel..

.At the 30-week mark my wife went into early labor. Thank god for the immediate and compassionate care of the nurses and doctors at the Children’s Hospital at UVA in Charlottesville, Virginia. They were able to hold off labor and gave my wife steroids for the lung development of the baby in case he did come early.

 Five weeks later, my wife once again went into labor, but this time it was too late. By the time we made it to the hospital, Chelsea was rushed in for an emergency C-section, and Christian Thomas James Cobb was born at an even five pounds. This was a very exciting moment for both my wife and I, as well as for everyone who came to the hospital to welcome baby Christian into the world. Little did we know that all the happiness and joy we felt would soon turn to overwhelming sadness and sorrow. During the birth a multitude of problems surfaced, and Christian was in dire straits. First, the sac containing the omphalocele ruptured and the organs were completely exposed. Second, it was determined that not only were the stomach and liver involved, but the spleen and intestines as well. This made the situation with the omphalocele extremely difficult. Christian was immediately taken into surgery and a piece of medical-grade plastic was sewn in place until the situation could be assessed. Unfortunately, this was the least of Christian’s problems. During birth he had stopped breathing and had been fitted with a breathing tube. During this time his brain had been deprived of oxygen and the possibility of permanent brain damage was present. These problems were presented to us and the news left our brains swimming with an overwhelming assault of thoughts and what-ifs. Seven hours went by before we were able to lay eyes on our beautiful angel: it was the longest seven hours I have ever experienced in my entire life. The doctors and nurses were doing everything they could to save our precious baby boy. This was only the beginning: the next seven days would be the most joyful, stressful, sorrowful and overwhelming days we will probably ever experience.

 October 13th, 2017. The first day was one of overwhelming sadness. It seemed as if every hour we were confronted with more bad news. While the amazing, caring team of doctors examined and ran tests on Christian, the news was a constant rollercoaster of good and bad thoughts shared by nurses, doctors and specialists. First, it was discovered that Christian had an extreme case of scoliosis: his spinal cord bent and twisted at the same time. This caused a major deformity in his rib cage development, adding to the pressure on his left lung. It was thought that this might be overcome as Christian’s right lung developed. With all the bad news, we just knew as loving parents we were completely okay and ready to fight a long battle alongside our child. We would never give up on him, and would support him no matter the cost, no matter the physical and mental strain. This was our son, and no matter the issues, our love was unwavering—like the love of God for his children, Agape love. Visitors started arriving, though limited to select friends, family, and church family. Without them, we would never have been able to get through such a painful ordeal. We are forever grateful. Those who had the opportunity to meet baby Christian all walked away with the same experience: “There was just something very special about being in his presence.” The strength and love that radiated from him and those around him was an experience to behold. Never have I felt such an unwavering faith and love, a feeling that cannot be expressed with mere words.

 October 14th, 2017, a day of waiting and more testing. It seemed that the excitement of the previous day had been too much for our tiny angel, and it caused his vital signs to repeatedly crash. His oxygen levels were increased, and insulin had been administered to keep his blood sugar at a sustainable rate. A no-stimulation order was put in place: his overwhelmed body needed some much-needed rest to recover from the exhausting surgery, poking, and prodding that our poor baby endured over the course of the first 48 hours in his earthly body. At this point Christian had been without oxygen three separate times, and the extent of his brain injuries were unknown. Without an MRI this could not be accurately assessed. So the alternative would be to connect him to a brain wave machine to monitor activity and examine the amount of damage that occurred from these episodes. It could have been mild damage (where he would have had some learning disabilities) or severe damage (which would have meant Christian needed total care.) Still we held onto hope and waited as testing was underway. This in itself was complete torture. We wanted nothing more than full recovery and the chance to just hold our precious baby boy! Three days to get the results seemed like an eternity, but it was something that had to be done. Meanwhile we were able to have our beautiful baby boy christened, something that we felt a necessity due to the uncertain nature of the situation.

 October 15th, 2017. After what seemed to be a decent night of rest for our strong baby, we had gained a bit of hope. After our first night of actual rest (a mere four hours) we were met with good news from his amazing nursing staff. The entire time, Chelsea and I remained in the hospital as she recovered from her  emergency C-section. We were lucky enough to be only two floors down from where our beautiful boy lay struggling but fighting with all of his strength. Christian’s compassionate and loving nurse had chosen to be the primary care nurse on his case whenever she had been scheduled to work. She informed us that he had a pretty decent night. His blood levels were good. The settings on the ventilator were down significantly. He had, for the first time, opened his beautiful blue eyes—like the clearest body of ocean you will ever lay your eyes on. Finally we were met with a glimmer of hope, and the happiness filled our hearts at the thought that now, finally, there was a possibility that he would pull through. We finally felt comfortable enough to leave the hospital for a few hours, since Chelsea had been discharged. Although difficult we gathered our belongings and went home to grab a bite to eat and get our first night’s rest in our own home. Leaving felt like the hardest thing we had ever done, but we had actually been given a slight glimmer of hope and were praying for the best. Little did we know we were about to receive a devastating phone call.

We had only been home close to two hours—enough time to shower and grab a bite to eat for the first time in days—when I received the call. One of our NICU doctors phoned to let us know we needed to return immediately. Christian’s right lung collapsed from the pressure of the ventilator. This happened due to the unfortunate instability of Christian’s lung functions and the pressure needed to keep his oxygen and nitrous levels up enough for him to heal. We made the decision to have a chest tube put in and hoped for the best. At this point our hope for Christian’s survival was fading fast. Still, we kept faith and hoped that our beautiful baby boy would pull through. With everything piling up, we knew it would be a long shot, but were willing to fight side by side with our precious baby boy. There was no way we were going to give up on him. The wonderful staff at UVA’s Children’s Hospital were gracious enough to give us a room on the NICU wing, so back to the hospital we went. With the instability that presented itself leaving was out of the question! 

The very next day, October 16th, hope emerged through tragedy. With much joy we received our latest update after two short hours of sleep. Christian had stabilized! We knew it was a long road and chances of survival were slim but hope remained, and the latest update gave us great hope. The ventilator levels were very low which was positive. They were able to wean Christian off oxygen, he was completely off of insulin, and it was time to warm him up. The entire time he had been kept cool to stabilize him, which meant that brain wave activity couldn’t be perfectly interpreted. This was a telling moment and we waited for the results over three long days. The next 12 hours would be essential in telling how much damage had actually been caused to the brain. During this time we witnessed increased activity from our little angel and cherished every moment of it. Chelsea was finally allowed to help care for our baby boy, and the experience of seeing the love radiate in those moments is something I will cherish for the rest of my life. Knowing how much love she had for our son, warms my heart with every thought of those beautiful moments. It truly had been an amazing day. Yes, it was still a difficult and overwhelming event, but for that one day, for those few hours, we finally had our baby boy to love and care for. We were still unable to pick him up or hold him in our arms, but just being able to do that little bit of care, I know will forever be some of the most joyous moments in our lives.

 Tuesday, October 17th, started out to be a pretty decent day for our family. Christian was stable, and Chelsea continued to help care for him at his bedside, helping the wonderful nurses assigned to our angel. Slowly, things seemed to be improving. At the time our earthly responsibilities were still upon us piling up with each passing day. We received no outside help besides the gofundme page we had started to hopefully alleviate some of the overwhelming medical and future care costs. This made for a very stressful situation, especially since I had no way to avoid going to work this day.  I felt comfortable enough with his stability to head out for a couple of hours in order to help with a project for which I had been ultimately responsible. With Chelsea at his bedside, I knew if something were to go wrong I would know immediately. It had only been four hours when I was finally able to check in, but it felt like an eternity. It took every ounce of energy I could muster to focus on the task at hand. Chelsea informed me that the brain wave activity we finally saw on the monitor had actually been determined to be a series of brain seizures. There was absolutely no way to tell that our precious baby was seizing due to the amount of fentanyl keeping him comfortable. This was alarming to say the least, and very disappointing. I was able to make it back to the hospital in time to not only meet with our family doctor, but to meet with Christian’s doctors as well. The inevitable was sneaking upon us, and even though we truly didn’t want to admit it, we knew that our choice was being made for us. We always had the option with all od Christian’s medical issues to remove our little fighter off life support, but this was never something we would voluntarily agree upon. We were fully prepared to take care of our child for the rest of our natural lives, no matter the extent of brain damage or disabilities. Yes, this is very controversial, especially with the question (what would his quality of life be like?) looming over us. But for us and our beliefs this was not an issue. We were fully prepared, and our love unwavering, no matter the situation. Deep down, however, something told us both we needed to get our daughter and family there as soon as possible. Things were getting worse and the seizure activity being monitored was now apparent.

Between Tuesday evening and Wednesday morning we barely slept. We just knew that this day, October 18th, would be one we would never forget. Wrestling with the fact that our son was truly suffering, our hope was slowly slipping and reality overwhelmingly apparent. I guess the reality had always been present, but we desperately hoped that a miracle would happen. Why not? They happen all the time, and this was an innocent baby. I try very hard to not push my religious beliefs down anyone’s throat, but in order to properly tell his story certain things cannot be left out. We prayed a lot that evening in private, with our pastors, hospital clergy, and everyone there supporting Christian. During this week-long period there were literally hundreds of people praying for our precious gift from God. I think our biggest prayer was that we would not have to make the decision to remove life support ourselves. We prayed that God would make that decision for us. I will not sit here and make things seem like more than they are. I’m not one to exaggerate, especially when it comes to a story so important. We questioned our beliefs at times but held faith close. We knew deep down that everything happens for a reason, but that little voice kept saying, “How could this happen to a family so faithful?” We knew there wasn’t much time, and decided to go get Mikiah, our five-year-old daughter. By the time we made it home, picked her up, and were getting ready to head back, the phone call came that sealed Christian’s fate. Again, we were told to get back immediately, because his other lung had collapsed. Fear, panic, and heartbreak overwhelmed us both. We knew this was it; there was nothing more that could be done. God had answered our prayer—not the way we truly wanted, but the decision had been made for us, and it took away a choice neither one of us could ever have been able to live with. It was now only a matter of time before Christian would be in heaven with our Father. 

The next ten hours would be the most painful but loving moments we will ever experience in our entire lives. Despite the devastating circumstances, we finally were able to hold our baby in our arms for the first time since birth. We will never be able to adequately thank nor pay back the NICU nurses for their loving, compassionate help and support in such a distressing time in our lives. Every opportunity was extended for the opportunity to spend and cherish the last moments of Christian’s life leading up to the moment he would pass unto heaven. A beautiful non-profit program called “Now I Lay Me Down To Sleep” was contacted, and we were able to get family portraits taken with Christian, Chelsea, Mikiah and I. These truly were the most heartbreaking but loving moments I have ever experience. The ability to hold him close and love on him before he passed was truly one of the most important things that happened while we were going through such a trying and testing time.

 Over the next couple hours, we spent as much time we possibly could holding Christian while waiting for that horrible, inevitable moment. UVA and the NICU had provided us with a personal family room over those last few days to be close to Christian. All the lines and IVs were removed, leaving nothing but his pain medicine and breathing tube, and we were finally able to really hold him as close as possible without all the machines keeping him alive. The moment finally came, his breathing tube was removed, and we were left alone to comfort and hold him in his last moments. Now, some say this would be the most terrible moment anyone could ever face, and to be honest it truly was a moment we will never forget, something I pray parent experiences. 

  During those last heart wrenching moments a sign was bestowed upon us—something that has completely renewed and solidified our faith. At the very moment of Christian’s final breath we were granted a sign, a true religious experience. We were placed in the room which we had been living for the past four days, little did we know it would be the very room we would experience something truly awakening. At the very moment Christian passed over to the Kingdom of Heaven, every light in the room flickered, as during a terrible storm when all the lights are on the verge of going out. In that moment, we heard an ominous sound. It felt as if the air pressure in the room suddenly changed, as when your ears pop going up a mountain or during takeoff on a plane. Chelsea and I looked at one another and simultaneously said, “God just took him.” 

I say this not to interest you with an astonishing story, but to reiterate how we knew in that very moment, that Christian’s short life had served an important purpose. His name was meant to live on, and we knew there was something that needed to be done. Between our experiences at the hospital and funeral, the number of people who reached out with stories of renewed faith and strength during his time here on earth were astounding. Every day we heard stories of how our faith and Christian’s strength were miraculous to those who received the daily updates. Those who knew us and Christian personally, as well as those who kept up with his daily updates on his gofundme and social media pages, reached out in overwhelming numbers. We still, to this day, hear stories that testify to us that Christian’s Purpose was not just to live six short days, but to live forever and to serve a purpose—CHRISTIAN’S PURPOSE! 

—-Jesse Cobb