“Everything was normal about my pregnancy with baby #2. All of his ultrasounds were fine and I didn’t have any of those ‘inklings’ that some women mention. My biggest worry was wondering how we would manage two kids so close in age. Our firstborn son was going to be 17 months old when baby arrived. With this consuming my thoughts, on days when I felt extra exhausted, I had an experience that brought peace to those worries while I was still pregnant. I was listening to a song called ‘You’re Gonna Be OK’ by Jenn Johnson and during that song was the first time I felt baby move. I instantly felt it was as if he was telling me it was all going to be okay. Little did I know how much heartache that little moment would carry me through.
We arrived at the Birth Center on the evening of June 24th, 2018, because my water had broken. To get things moving, my husband, Ryan, and I walked around an empty, dimly lit pond and parking lot as we dreamed of what this baby would be like. We dreamed of watching our sons’ relationship grow over the years and watching our firstborn become a big brother. We had a list of names picked out but couldn’t land on one, so we decided we would name him once we met him. Labor progressed quickly and during the final push in the bathtub, I heard the name Asa (pronounced Ace-uh) as clear as day in my head. It was one of the names on the list, but not a likely one.
As we admired our new baby with midwives and my doula (who is also my best friend) surrounding us, there was a quiet heaviness in the room. He looked different. His vitals were checked and he seemed fine, so we moved to the bed to lay with our new baby. I found out later that the midwives were in another room deciding what to do. The main midwife said, ‘His vitals look fine so there is no rush. They may never get to do this again, where they are just holding their baby like this.’ As I write that, my heart aches. It aches with sincere gratitude for her compassion, foresight, and sympathy. That small, kind act is something we could never repay her for. Had we delivered at a hospital, he would have been taken from me immediately. My heart also aches in pain but I could not possibly foresee what was to come, but these few extra hours laying on that bed would be something I held onto so tightly during the following week.
My hormones were still raging and I was still thankful to be done with labor, so it was fairly easy to ignore the unspoken heaviness in the room. The midwives let us lay on the bed for a couple of hours as they periodically checked on Asa, who was doing great, and allowed us time alone to connect with our new baby. Then, it was time to do the newborn assessment. This is when I woke up to the reality that something was wrong. From his head to his toes, they kept pointing out abnormality after abnormality. We all decided that Asa needed to be seen by specialists before heading home so the midwives escorted us.
Ryan and I were alone with Asa in the car as we headed to the nearest children’s hospital. I’m a look-on-the-bright-side type of person, so I was naively thinking this would be a quick pitstop before heading home to let our toddler meet his new baby brother. My husband, on the other hand, already knew. As we calmly talked on that moon-lit drive he said something to me I’ll never forget. He broke a short silence and said, ‘If anyone would be trusted with a special-needs child, it would be you. You have the grace and the patience to do this.’
We ended up staying in the NICU for 50-something days. Within the first 24 hours, a geneticist came in and sat with us. She said she couldn’t say for sure because the blood panel would not return from the lab for another week, but she and all the other doctors were almost certain Asa had Trisomy 18. This is honestly the first time I had ever heard of it. She got straight to the point. In the most sincere, heartfelt way, she told us that life expectancy was likely to be extremely short as this syndrome is ‘incompatible with life.’ As she said this, she knelt down between us with a hand on each of our knees. We began to weep as she genuinely apologized. They prepared us for the likelihood of being sent home on hospice within the next few days. It took a week for the blood panel to come back in full and the results showed that he did not have any chromosomal abnormalities! This meant we got to keep our baby! The joy of life outweighed our uncertain future with this precious gift.
We found out in those coming weeks that Asa has a rare genetic syndrome called Saethre-Chotzen Syndrome, which is associated with craniosynostosis (the premature fusion of skull bones). His case is more severe than I’ve been able to find. He has midface hypoplasia, a soft cleft palate, (had) a recessed forehead, a large ASD (hole in heart), vision impairments, moderate-severe hearing loss, craniosynostosis, and obstructive sleep apnea. He requires oxygen and a feeding tube at home along with other equipment. He’s already had two major skull surgeries with another in a few months. He will also have a handful of other surgeries within his childhood.
On one hand, we’re still processing all we have been through in these short 8 months, which includes trauma and disappointment. Some days it feels like I’m simply surviving through the exhaustion of sleepless nights, appointments, and never-ending questions. On the other, greater hand, I’m overjoyed knowing we’ve been included in an elite club that not everyone gets the chance to be a part of. That it is a privilege to care for and to love Asa. We don’t know what the future holds for Asa, but we know he will be beyond loved all along the way.
My goal since the beginning has been to be vulnerable throughout this journey. To allow others to witness what it is we are walking through. I hope people see acceptance, love, and joy; but I also hope they see grace. That the journey we’re all on can be both hard and good. That hard doesn’t mean that good is lacking, it just makes the good that much better. Asa is named after an Old Testament King who was known for bringing his people back to the true heart of worship. I hope people can see from our story that God is worthy and He is good, whether our immediate circumstances tell us that or not.”
This story was submitted to Love What Matters by Cassie Ellis of Orange County, California. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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