by My name is Karinne Greve. My husband Landon and I live in Dillon, Colorado and have been married for six years. We have three boys, Gunnar 3.5, Griffin 2, and Grady, who is now with the Lord. I am grateful for this opportunity to share our story with this amazing Hope community because we appreciate any chance to talk about our sweet Grady Jake and bring honor to his short life. Each of our stories is unique, and yours’ have deeply impacted me. Even though the common thread is loss, pain, and sorrow, we have discovered that amid the sadness and grief, we also find hope. When I read your stories, I experience your emotions as my own. As parents with children in heaven, our similar journeys provide me a safe place to cry, grieve, and experience all that is associated with our aching loss. Every story has touched my heart, and I realize it takes courage to express our pain with words. I applaud your bravery and willingness to share. Here is our story. Thank you for reading it.
Our story began in September 2016 when we found out we were pregnant with our second child. We went to our first doctor’s appointment in anticipation of seeing and hearing our baby’s heartbeat but was surprised to find out there were two! It was early in the pregnancy, so we were instructed to return in two weeks to make sure things were progressing normally. That next visit, the ultrasound screen confirmed what we had expected: identical twins! Completely surprised, I was flooded with anxiety as I thought about what life would look like with three small children so close in age. At the time our first child was 12 months old and I was breastfeeding once a day and still trying to adjust to being a new mom. After the initial shock and stark reality of seeing two babies on the screen, my feelings of joy, excitement, and wonder of what identical twins would be like finally arrived! We were full of excitement as we anticipated this new season in our lives.
In January 2017, our 20-week ultrasound showed both boys doing well; both happy, growing, and healthy. A twin pregnancy automatically places the mom in a “high risk” category, so as a precaution we had our first appointment with a high-risk doctor the following week. We arrived excited to see our babies again and observe how much they had grown in two weeks; we had no thoughts of worry or concern especially since our 20-week ultrasound was so positive. Little did we know; our lives were about to take a dark turn. The ultrasound tech began the scan on our boys and then abruptly left the room. Looking at the picture, I never suspected a thing and only saw my sweet Grady Jake looking back at me with his hands pulled close to his face. I never even considered that something might be wrong. Looking back at those pictures I now see that something was wrong, but my mother’s love for my child saw straight past it. The ultrasound tech left and returned twice, and at that point, I began to feel concerned.
We completed the scan and were ushered back to the doctor’s office, where we received the grim news. The scan had shown that our sweet Grady Jake now exhibited severe fetal anomalies that included clubbed feet and hands. The preliminary diagnosis was arthrogryposis, but the physician also mentioned the possibility of Trisomy 18 as well. There were no apparent signs that Griffin was also affected, but concerns were high since they were identical twins.
Hearing this news made my heart feel like it was exploding into a million pieces. Every parent’s worst nightmare was suddenly our stark reality. Not only was something wrong with one of our babies, but now both of their lives were in question. As identical twins, the boys shared placental blood flow which put both at risk. Tears immediately poured down my face as I began trying to process this overwhelming nightmare of thoughts and concerns for my unborn children. This devastating news started us on one of the most demanding and challenging journeys of our life.
After being blindsided, I was overwhelmed by agonizing guilt. Guilt takes many forms in our story, and this was only the first glimpse of what would soon emerge regularly. Almost immediately, my thoughts were filled with questions like, “What did I do to cause this?” “It must have been my fault that my son’s hands and feet developed like this.” I combatted those thoughts with logical information like “I’m 27 years old and have never tried drugs or exposed my babies to anything harmful; I didn’t and don’t drink. I took prenatal vitamins and did everything possible to keep my babies healthy.” Even with all the logic, I still questioned myself and wondered why. “Why was this happening to us?” The agonizing weight of guilt was unbearable.
The high-risk doctor put us on the schedule at Children’s Hospital in Denver for a full day of testing to determine what exactly was going on with our boys. We had to wait two grueling weeks for the test results to come in–I couldn’t eat, couldn’t sleep, could hardly take a breath. I had thoughts of not wanting to live if I was going to lose both of my babies. I repeatedly called the hospital to see if we could schedule an earlier visit in hopes of getting definite answers so that this nightmare would end, and the feelings could go away. I just wanted my babies to be ok.
The two brutal weeks passed, and we entered the hospital for another round of tests. MRI, heart echoes, and more laborious ultrasounds. When the tests were done, we were again escorted into a room, but this time it was a conference room filled with fifteen people–doctors, nurses, social workers, and some of the best surgeons in the country. Terrified out of my mind, I spotted two empty chairs in the middle of the room waiting for my husband and me. Trying to hold back tears, and bracing myself for the outcome, we walked in and sat down, while everyone in the room awkwardly stared at us. I avoided all eye contact and silently prayed that somehow God would heal our babies so that everything could return to normal and silence this cruel nightmare. I prayed over and over, “Please God, don’t let us have to make decisions that involve the fate of our children. Please save our babies…if you need them back; please take them with your hands, not ours.”
The doctors began to talk and show us images of our little Grady Jake. I looked up, and there he was. He was perfect. Still growing, still thriving as a twin, but his hands and feet weren’t typical. The doctors explained to us that the tests had come back normal, with no signs of stroke, all organs functional, all ultrasounds and heart echoes, healthy, and no indications of Trisomy 18 or any other genetic condition. Essentially, the experts were saying that they had no idea what was wrong with our son and they had never seen anything like this before. The doctors warned that even though his organs appeared to be functioning normally, ultrasounds are unable to determine if they are fully functioning. The doctors also suspected that his clubbed feet and hands most likely indicated some mental dysfunction as well. Trying to keep from bursting into tears and using every inch of my body and mind to hold myself together, I sat unsure of what all this meant. The doctors then began to explain the most complex and devastating aspect of our unfolding story. They said that our son Grady was sick; they just weren’t sure the extent of his illness. They also said that Griffin might also be sick because they were identical twins. They were unable to fully tell without an amniocentesis, which was far too risky; so we would have to wait till they were born.
We then received more devastating news; there was a high likelihood that our son Grady would pass away in utero. The physician said that if he made it to birth, he would probably pass away shortly after; if he did survive, he would most likely suffer severe and challenging handicaps throughout his life. We then discovered that identical twins uniquely share 100% blood flow, so if Grady passed away, it would cause a severe drop in Griffin’s blood pressure, which would result in either Griffin’s death or possible mental handicapping.
Our minds were overwhelmed with information and data and words we had never heard before. We sat stunned and shaken in the middle of all that confusion, as the physicians presented us with three possible scenarios.
The first option was to continue with the pregnancy and let it run the natural course. Things would be allowed to progress organically, and we would stay consistent with routine check-ups. If Grady passed away in utero, we would run the risk of also losing Griffin or him being disabled the rest of his life. Depending on how far I made it, and if both boys survived, one of the following would be a likely outcome: Grady would experience serious physical disabilities and possibly severe mental disabilities; Griffin could be entirely healthy, or more likely suffer mental effects from Grady’s genetic inclination. Both could be stillborn; or both born prematurely, potentially causing one or both to have cerebral palsy.
The second option included medical intervention. Generally, in this type of situation, they have the technology to split the blood flow between the babies which creates a separate outcome for each child individually. In our case, this wasn’t possible due to how close the cord insertions were. The only other option in this scenario was to perform a procedure called RFA (Radio Frequency Ablation). This procedure completely stops blood flow to Grady to save Griffin from the effects of the blood pressure surge. They assured us that the procedure was 80% effective and if all went well, I would most likely make it to 36 weeks, giving Griffin the best possible chance for survival. This procedure came with a significant number of potential risks, including infection, premature delivery at 23 weeks (due to ruptured membranes), Griffin’s reduced chances for survival, and an increased chance that Griffin would suffer the ill effects mentally,
Our final option was to be admitted to the hospital at 24 weeks for the duration of my pregnancy to monitor our sons till birth. If anything looked like it was taking a downturn, they would endeavor to respond quickly enough to save Griffin. The physician then added the caveat that this option carried the risk and possibility of a delayed response time that still put Griffin’s life and condition at risk, along with the likelihood of early labor and delivery, which lowered both boys chance for survival outside the womb and increased the likelihood of cerebral palsy.
We left the hospital that day overcome with emotion and having no idea what decision to make. We continued to pray like we have never prayed before– prayed for our babies to be healed. Prayed that if God were going to take our babies, he would do it with his hands, not ours. Prayed that if we were going to have to make this choice, God would give us some solid direction by revealing regression and decline in Grady, so that we could absolutely know that his hand was in this heartbreaking decision. My husband and I are strong Christians, so we would never consider an option that required an active choice on our part. Never would I have thought that God would even remotely put us in this kind of situation. We knew God was big and that he was in control and firmly believed that God wouldn’t give us something we couldn’t handle. But wow, we were completely and utterly overwhelmed.
We felt paralyzed at a crossroad, unable to move. The brutal reality of having to select one child over the other consumed my anguished thoughts. It felt like our children were standing on opposite sides of a cliff; one was falling, and the other was trying to save him. If we reached to help pull them up, we knew there was a good chance of saving one but only a minuscule chance of saving the other. We also knew that our “help” could potentially cause an irreparable loss. Ultimately, we understood the reality that if we didn’t do something, we’d most likely lose them both.
Our hearts ached, and all we could do was cry and pray. We made an appointment for the following week and made space for God to answer and act. We fervently hoped he would respond in an apparent and divine way, but we were also acutely aware that God sometimes answers with silence. Nevertheless, we secretly dared to hope and pray.
During that week, we began to pray that if we were to intervene medically, there would be measurable regression in Grady’s condition by our next appointment. We asked God to show us that Grady was headed to heaven. If we weren’t supposed to intervene, we asked God to have the ultrasound indicate that he was thriving, rather than regressing. Our prayers became specific and intentional—we had to hear from heaven to make this agonizing decision.
A week passed. At the follow-up appointment, the scan revealed that Grady’s condition had deteriorated and he was experiencing backflow to the placenta along with an abnormal Doppler reading in his liver. Both confirming indications that his condition was grave and that his passing was imminent. Tears poured from my soul and streamed down my face. God had spoken, and we were compelled to listen. He had heard our prayers and confirmed the direction we were to take. His timing is always perfect.
We returned home for two sad and mournful days. We arrived at the hospital on February 16th, 2017, which would forever be the last day that I would carry Grady’s spirit in my body.
The hardest day of my entire life.
We were admitted early that morning and prepped for the procedure. The ultrasound tech did one last scan that would be the final moments we would ever see Grady alive on this earth.
The tech told us that Grady was in an abnormal position for a baby in utero, which confirmed my belief that he would have passed away soon after, if not that day, and was just holding on to save his brother. Just one of the many confirmations that we received from God. The decision was made. We would have the procedure.
On the way to the operating room, I experienced a panic attack.
I couldn’t breathe–I couldn’t move–all I wanted to do was back out and go home. I had never had a panic attack before, and I was terrified. I had no idea what was happening as I was overcome by every possible emotion I have ever experienced at once. Thoughts of what was about to occur overwhelmed me. The attack was severe, and I felt satan looming in the background trying to attack at my weakest moment. God’s presence and grace came through and gave me the strength to walk into that operating room. I left my husband, who was unable to go back with me and took the biggest step of faith in my entire life. I would not have been able to walk back into that operating room had God not been right by my side. I was only lightly sedated for Griffin’s safety, and aware of everything that occurred throughout the procedure. Each minute detail of that hour and that entire day replays in my mind repeatedly and often.
After the procedure, they wheeled me back to our room where I saw my husband again. The ultrasound tech was with us monitoring Griffin and said how smoothly everything went. The smoothest she had ever seen. Again, another confirmation from God.
I laid there and wept. The realization that I would not get to meet Grady till the day I see him in heaven was throbbing and raw. All I had were his ultrasound pictures (which I regret not getting more), his movements in my belly, and now only his lifeless body inside of me. His spirit was now with the Lord.
We were released later that day, earlier than expected. Another confirmation from God because things were going so well. I was on modified bed rest for the duration of the pregnancy. That precaution created another painful, guilt-inducing point in our story–I couldn’t pick up our oldest son, Gunnar or care for him the way I felt a mother should. My relationship with him languished and struggled as I physically and mentally could not be the mother I wanted to be at the time.
Days, weeks, and three months passed. Doctors’ appointments and stress tests every week to monitor Griffin’s progress and condition made for a long, arduous journey…We continued to be hopeful that Griffin would have every possible opportunity to thrive and be healthy. Always hoping and praying that we had made the right decision.
At 35 weeks 5 days, I went into labor and delivered the boys on May 22, 2017, at 9:01 p.m. We celebrated Griffin’s entrance into the world and then given the opporuntiy to see Grady and spend time with him. Griffin was born a healthy 6.2 oz. and 19 in. long with no signs of any health or genetic issues… Praise Jesus! A joyful and difficult day for us. We were so grateful that God allowed us to have Griffin.
Despite the mountain of relief that Griffin was alive and healthy, my heart still ached and cried that I no longer had any physical connection with Grady. I had allowed myself to hope and imagine that when Griffin was born, I would finally be able to breathe normally again–and that the stress and multitude of emotions would subside. That did not happen, and the tension between gratitude and searing loss continues to battle in my soul, every day.
Grief is my daily companion, and no doubt will continue to be until the day I see Grady in heaven.
We think about Grady every single day and have a tangible reminder of him when we look at Griffin. God was sweet to make them identical twins so that we could get a glimpse of what Grady looks like and who he would have been.
Grady’s brother, Griffin will be two next month. He is a happy, healthy, thriving toddler, developing normally, and meeting all his milestones. We watch him running, walking, laughing, and teasing his older brother and realize what a gift he is to our family—such a special soul. He is our affirmation and daily evidence that we made the best possible decision for both our sons.
When we look back and replay all the options and possible outcomes, we realize now that guilt would have been a factor in every single one of them. Our family is still learning how to process and face grief and guilt—two steps forward, three back some days. We intentionally seek wisdom, people, and connection to keep guilt at bay in order to move forward, all while being intentional about carrying Grady with us. In reality and through all of this, one thing that I have learned about guilt is that you can’t avoid it, you can’t run from it, and you can’t hide from it. In some ways and if I’m honest, I almost feel that if I don’t feel guilty, I am not honoring my son…That I am forgetting about him. I know this is a lie from Satan and understand that guilt is a paralyzing, fear inducing monster that he uses repeatedly to keep us stuck and lifeless. We are intentional about turning our hearts toward God and seeing the pain in our journey as a result of living in a broken, disconnected, and fallen world. We know that God is always redeeming these painful and broken places and making good growth out of them, despite how difficult it is to see at times and in those painful seasons. We choose to honor God and Grady by honoring our story and being authentic with our pain.
As we continue this journey, we are learning to navigate our story with our boys; especially about how to guide Griffin through his story. The bond that identical twins share is uniquely special and one that will be implicitly present in him throughout his life. Doctors tell us that he will most likley sense a part of him missing and will likely express these feelings through different outlets throughout his childhood. For example, he may draw two of the same objects, experience an imaginary friend, or include an “extra person” in pictures before ever being told that he has a brother. With this in mind, we are preparing for how best to guide Griffin in this tender process. We openly speak of Grady and want him to be a normal part of our family just like our sons, Gunnar and Griffin. We take each day one at a time and through counseling and wisdom from our family, friends, and mentors, we hope to guide our sons toward a healthy, fulfilling, and redemptive life empowered by God. Fueled by his grace and inspired by their brother Grady. We hope Griffin finds purpose and joy in his life and that he never feels unworthy or guilty for the life he was given.
God ultimately gets the glory in our story, and I can genuinely say that I am honored that God felt he could entrust us with this journey, with his children, and with this agonizing and painful decision. I wasn’t able to see this prespective until we met our pastor for coffee not long after the boys were born. During our conversation, he told us that when he heard our story, he was deeply moved and that he wanted to get to know the people that God entrusted with such a momentous decision. This really moved me and thankfully altered my perspective of our story. It really made me ponder the meaning and reason for our story. In many ways, our story resembles that of God giving his son Jesus for our life. Jesus died for our sins so that we could live in eternity with him and have connection with him now. Grady’s life sweetly resembles Jesus as he sacrificed his life so that his brother could live. I love all three of my children so very much. People may judge, and thoughts will loom, but I know in my heart that we made the best decision we could have possibly made.
