FEARFULLY AND WONDERFULLY MADE: DECLAN’S STORY. I’ve always wanted a big family with many children. After a very early miscarriage and a few years of trying to get pregnant, my husband Cameron and I were blessed with a healthy baby boy in 2019. A year later, we found out we were pregnant again! We were so excited to bring home another baby. From the very beginning of this pregnancy, I remember specifically praying for every body part and organ to develop the way that it should and according to how God intended this baby’s organs and bones to develop. Everything seemed perfect. And then I had my 12-week ultrasound and appointment.

Cameron was not allowed to join me for my appointment, as COVID protocols were still in place. The ultrasound tech’s demeanor during this appointment was subdued and distracted—the complete opposite from the ultrasound tech with my older son. She started off performing a belly ultrasound, but then moved to a transvaginal ultrasound. This was slightly concerning to me, but I told myself this was probably simply because my baby was being uncooperative. After the ultrasound, I had to wait an extremely long time to see my doctor. I kept looking at my ultrasound photos while multiple other women came and went through the waiting room. When I finally saw the doctor, she started flipping through papers, telling me that the measurements were great, and everything was where it should be. I didn’t have a chance to be relieved, because as she flipped to the next page, she paused, and said that she was so sorry, but she misspoke. Everything was not good, and she needed to get her computer.

                  In my heart, I was not surprised. During the pause, I knew she was going to say that something was wrong. When the doctor came back into the room to start over, she apologized profusely. She went on to explain to me that my baby had some concerning abnormal findings on the ultrasound: a cystic hygroma (a mass of excess fluid) and a clubfoot. We called Cameron together and discussed our next steps. We began a long, difficult, and emotionally draining process of blood work, genetic testing, and meeting with specialists. Cameron and I spent lots of time waiting for answers. The first round of bloodwork didn’t tell us anything conclusive other than we were having a baby boy, whom we named Declan. The specialist we began meeting regularly with suspected that Declan had a skeletal dysplasia—the initial scans she completed showed not only the cystic hygroma and clubfeet, but also abnormal posturing of his legs and excess fluid in his belly. We opted to receive an amniocentesis around 16 weeks to get a thorough skeletal dysplasia panel to diagnose his genetic condition. We were told that typically, only very severe forms of skeletal dysplasia show up on ultrasounds, so our hearts began to fear and prepare for the worst. The ultrasound before the amnio showed us even more abnormalities than we had previously seen—Declan’s long bones (arms and legs) were measuring 5 weeks smaller than they should have. His long bones continued to measure 5 weeks smaller until I reached my 3^rd trimester, where they began to fall even further behind. The end of my pregnancy showed the long bones 12 weeks smaller, a belly size 1 week larger and a head size 4-5 weeks larger than his gestational age. I remember thinking one morning that my baby was going to look so weird—and then immediately being so ashamed of that thought. Cameron reassured me that there was nothing wrong with the thought, as yea…Declan would not look like a typical baby. But after he was born, I thought he looked like the most perfect baby.

The skeletal dysplasia panel results took forever; I frequently spoke with my genetic counselor to check the status of the results and continued to anxiously await the results. Finally, the results came in. It was the news we had been dreading. The amniocentesis confirmed a lethal skeletal dysplasia diagnosis for Declan. The only other baby in medical literature with Declan’s exact genetic mutation only lived for one day. I know I cried that evening, but I was also so very numb. It was so hard and devastating to hear the confirmation of the lethal diagnosis we had been dreading for the past two months. 

Eventually, I transferred to the high-risk practice that would deliver me. At the end of my first appointment there, I was given an advanced care birth plan to review and fill out. Even though we had discussed at other appointments the type of decisions we would need to make with Declan, seeing everything in writing hit so differently. I just sat in my car after that appointment and began to hyperventilate and sob uncontrollably. At no other point in my pregnancy or after Declan was born and died did I feel so overwhelmed or cry so hard.

We received so much prayer for healing from our church, family, and friends. I was so hopeful that Declan would receive miraculous healing…but as time went on, I accepted that was not going to happen. It began to be hard to hear stories others would share with us of babies that had been given lethal diagnoses, but received healing and were healthy and thriving instead. We prepared ourselves as best as we could for the reality that we would not be bringing Declan home with us after he was born. The roller coaster of emotions was unlike any I have experienced. I remember telling my husband that I felt like I had an “invisible pregnancy”—strangers would ask me the typical questions you ask pregnant women, but I felt like people that knew Declan’s diagnosis wouldn’t ask me how my pregnancy was going. I understood that people probably didn’t know what to say, but it still made me feel very alone at times. Despite all of that, I was able to take solace in the tangible presence of God. There were so many instances where only God could have lined up the timing of events, people and doctors that crossed our paths at specific times, financial provision, and the right words spoken or songs heard. I felt God holding my hand through every step of this journey.

I went into labor on Thursday, August 5, 2021, at 37 weeks pregnant. That afternoon, I went to the hospital feeling completely at peace and excited to meet my baby, despite knowing what was to come. Declan Thomas was born at 6:09 pm via c-section, weighing 6 pounds 11oz and was just under 14 inches long. It was very overwhelming in the OR, but we decided to send Declan to the high level NICU in the neighboring children’s hospital. We were able to go and visit him that evening, as well as the next day. We were overwhelmed with so many emotions and the decision of what was best for Declan. We had some very painful and honest conversations with one of the neonatologists and my mom. We came to the hard realization that the chances of Declan ever living without the assistance of a ventilator were non-existent. And because of our faith, we believe that in death, Declan would immediately be in paradise, pain-free, with Christ. We couldn’t justify keeping Declan in pain, living only off a machine for any longer, so we moved him to comfort care. I was able to hold my sweet baby and sing and talk to him as he peacefully passed in my arms at 3:35 pm on August 6.

Healing from the loss of Declan has been a slow process. Cameron and I have processed my pregnancy and Declan’s death in different ways, on different timelines. There are still painful moments when I think back on this journey, and I know I am a different person today, having experienced this loss. But I am at a place where I am at peace. From the very beginning, from Declan’s conception, I had been praying that every part of Declan was formed the way God intended him to be formed. I have to believe that Declan’s genetic condition is a part of who Declan was always supposed to be, and without this journey, I would never have experienced God’s love and presence in the tangible way that I did.

If you are local to Williamsburg, VA, and want to join a community of support for the journey of infertility, miscarriage, or infant loss, please go to www.kairos825.com or email kairos825@gracecovpca.org