A Trisomy 18 Angel

At just 20 weeks gestation, we were told that our second son was "incompatible with life." We learned of the term Trisomy 18 for the first time, and tried to swallow the news that I would most likely miscarry this child. If he defied the odds and I carried to term, he would likely be still born. They stated in no uncertain terms that if our boy were to be born alive, it would be a miracle, and he would likely only live for a few minutes or hours at best. Stunned. Shocked. Heartbroken. All of those would be massive understatements. But our natural follow up questions were simply about what could be done to help him. This seemed to take our doctor by surprise, but she did eventually offer a meeting with a cardiologist to discuss his heart defects and what potential options might be available if by some miracle he survived birth.

Our research began, and we learned more about this "death sentence." We learned that Trisomy 18 wasn't a death sentence at all. In fact, many, many babies and children with this diagnosis were still alive, and actually thriving, thanks to the life saving surgeries, supports and interventions that were offered to them.

The fight was on. We were determined to fight for our sweet child to live. To live as long of a life as God would allow, and to make sure he was offered every possible solution and source that might give him a chance at living longer.

Fast forward 9 weeks, and I was required to undergo an emergency c section. Samuel had stopped growing and it was imperative that they deliver him quickly, if we wanted to meet him alive.

He was born at 1lb 12oz and had to be immediately intubated and transferred to the NICU across town. I got to touch his tiny hand right before they whisked him away.

In the minutes, hours, and days that followed, we were discouraged to learn that many of the doctors we had met with before his birth regarding his possible course of treatment we're no longer offering much if any hope for Samuel. In fact, we were encouraged many times to stop fighting for him, and just let him pass away.

But fight on we did. Samuel defied the odds. He kept growing and stabilizing. He was fed my milk via a feeding tube, and we got the privilege of holding him for hours each and every day. We strived to never miss a single set of cares (these were done every 4 hours) and we even put on birthday hats and sang to him every single evening at 9:06 pm. We knew the next day was never guaranteed, so we soaked in every single moment with him. All the while, fighting for the doctors--even doctors across the country--to see his value and offer him the life saving heart surgery he was in need of.

We knew he'd never be able to come home without it. The days went on, and still we fought. As Samuel grew, his personality developed more and more. His likes, his dislikes and all of his precious facial expressions that are still etched upon our heart to this day.

Eventually, the conversations surrounding surgery started to shift, and it became more likely that Samuel might actually be able to get approved as a surgical candidate. Our hearts swelled with pride at how far our boy had come, and we were finally filled with so much hope that surgery could be possible.

During this time, his story was being spread far and wide and countless friends, loved ones and even strangers were watching Samuel's story unfold and holding their breath awaiting each new update regarding his possible surgical candidacy and his state of well being in general. Thousands were praying for him, and we felt so encouraged and strengthened by this unseen community who was walking alongside us during this emotional fight.

We knew that no matter how much time we got with Samuel, his life would be a testimony to the goodness of God. And we just counted ourselves blessed each and every day to have more time with him than we were ever promised. We knew we'd never give up, because of course, we longed to have as much time with him as possible! But we also knew that it was very likely--probable, in fact, that Samuel might not ever get to come home. Despite this heart wrenching knowledge, we prayed every day for a miracle. That he might get the surgery he needed and that his lung function would improve so that he might be weaned off of the ventilator.

He eventually passed away one morning, seemingly out of the blue. Our hearts were shattered, and it felt like our world stopped turning. Samuel's earthly fight was over, and he was now and forever in the presence of the One who made him. Never to be reliant on a ventilator, IVs, medications or monitors ever again. Though we felt stunned, angry and hurt, we never once stopped trusting God. Despite all of our questions and all of the tears, we clung to God's goodness, kindness and faithfulness. When we couldn't make sense of why he was gone so suddenly after so long a fight to get him to grow and improve, we praised God for the time we were granted with our miracle baby. After all, at the beginning of his story, we were told we'd have no time at all.

99 days. That's what we were given. And in those 99 days, Samuel changed our world. He impacted so many and still does to this day. He fought the good fight and finished the race. We are determined to do as he did with the time we have left.

Through Samuel's life and death, God led us to be house parents for neglected and hurting children. Children who need someone to fight for them. So now, with the help of Samuel's big brother and new baby sister, we fight for these children every day. Because Samuel taught us how.

- Rebekah, Samuel's mama. 

1 comment

God is ALWAYS Good! Samuel was worth the fight.


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