We heard Sam’s heartbeat yesterday, our favorite song, as strong and steady as always. His movement is regular, and he is a joy to carry. Even before he is born, little pieces of his personality come through in his movements, his schedule, even his musical preferences (he continues to dance to Lost by Coldplay–we wonder if he likes the beat). He curls up tight during ultrasounds, and we think he might hate them as much as we do. He loves to have his back scratched, and arches his little back when I run my fingers along my tummy. His daddy does the same thing when I scratch his back! We are in love with this little guy, our son, a treasure.
Since we started on this painful journey, I have read lots of stories about poor prenatal diagnosis. The doctors’ prognoses were always dire, but the wide variety of ways these babies’ stories played out made me realize that I needed to keep my heart open. Some babies’ hearts stopped beating in their mothers’ wombs and had to be delivered stillborn. Some babies were lost during delivery. Some babies lived for minutes, some for hours, some for days, some for years. Some babies came out with fewer anomalies than predicted, some with more. Every story was a choice to protect life, and each is uniquely beautiful.
Their babies’ lives were as unique as the decisions of the parents along the way, and I am finding that there is no set of rules for this. Steven and I are embracing this God-given strength and responsibility as Samuel’s mother and father, treating doctors as no more than knowledgeable advisers, and even letting go of the ones whose advice is poisonous. If I could offer any advice to fellow trisomy 13/18 parents, it would be the same advice my mother offers me every time I deliberate: you’re the boss, not the victim. Beg God for wisdom, that you would be able to make the decisions needed for your baby’s unique needs. Switch hospitals, change doctors, order the insensitive nurse out of the room.
For the most part, I have written my thoughts and feelings, leaving the gritty medical details and decisions out, as I’d prefer to guard those as personal for the most part. But I’d like to share a few details, not for my readers’ approval or otherwise (you’ll notice I turned off the comments), but for other parents like me, who are looking for stories. I’d also lovingly request that our family and friends keep their opinions to themselves regarding this particular decision, unless we bring up the subject and ask for your advice.
Steven and I have been blessed with an obstetrician whose goal is to give me as healthy a pregnancy as possible, despite Sam’s prognosis. We feel our appointments with him are conducive to our goal of enjoying every moment we have with Sam, and giving him every opportunity to thrive for every day he is afforded. However, the ultrasound appointments were becoming fruitless, even counter-productive to our goal in this difficult pregnancy. The doctor came across as insensitive and even seemed surprised we were still pregnant with a growing baby during our last ultrasound. We chose not to have an abortion not because we were hoping the diagnosis was wrong or because we misunderstood how dire trisomy 18 is, but because Sam is our baby boy and we refuse to exterminate him. Being treated like an idiot by a doctor is unacceptable, and I am appalled at the number of trisomy 13/18 stories in which doctors are allowed to belittle their unborn patients’ existence.
Our last ultrasound was a few weeks ago. My heart hurt as I watched my sweet baby cringe tighter and tighter the more the tech and doctor pushed to get measurements and attempt to satisfy the checklist for trisomy 18. This is the baby who loves to have his back scratched, who opens up and kicks and punches when his daddy talks to him, who does somersaults in the middle of the night. Responsive little Sam was cringing into a tiny ball, and stayed still for a few days after that. We decided we needed to protect our vulnerable son from the disdain that office so clearly had for him, and vowed to never step foot there again.
We deliberated over asking for a referral to a different perinatalogist, but made the decision to forgo further extensive ultrasounds with any perinatalogist, as we wondered what the point was. There is no surgery, no medicine, no cure apart from a miracle from God that will set him free from this disease. We were gleaning information for information’s sake, and the fruit was worry and fear, which is not only pointless but counter-productive to the kind of pregnancy I seek. Gratefully, our obstetrician is fully supportive of our decision. I recognize that some parents aren’t as blessed as we are to have a fully supportive OB, but I would encourage you again that you are the boss, not the victim.
This is a time we’ve decided to invest in my physical and emotional health, as both are so intertwined and so important to Sam’s well-being. We’ve simplified our schedule, made time to spend with friends who will laugh and cry with us, and sought the support and counsel of people we trust. This is the season to hope in quiet waiting, enjoying Sam for who God has made him to be, telling his story, and hoping, hoping, hoping. I am asking God to display extravagance in His goodness to us, to give us a miracle and allow us to raise our son. Steven and I feel such peace in allowing ourselves “radio silence” while we fly the last leg of the pregnancy. This is what we feel we are called to do for Sam as his parents.
Another decision we have made is to gather things for Sam, as though we expect more than what the doctors have predicted. This is something we went back and forth over–whether or not subject ourselves to the possibility of filling our home with baby things and never bring home a baby. It comes down to hope, and we feel we need to not only allow hope into our hearts, but demonstrate it by preparing for Sam. We do this for our own hope’s sake, and also because we need Sam to know that we wanted him and were ready for him, even if our hope isn’t answered this side of heaven.
I have discovered that, just as it’s impossible to be halfway pregnant, I cannot halfway prepare for a baby. Either you prepare or you don’t. Either you gather what a baby needs, or you avoid it. It’s a scary decision, to hope enough to prepare a crib to possibly be empty, but hope is worth it to us. Our first purchase was a carseat, which was symbolic, as we have been given zero hope of ever leaving the hospital with Sam. Pray with us that Sam will use it, not just once, but over and over.
Our decisions are as unique as Sam, and I hope they are an encouragement to other parents, to make whatever decision the Lord lays on your heart to make for the welfare of your baby, whether it is to forgo ultrasounds as we have, switch doctors, have a baby shower, tell only close friends about the diagnosis, or buy a crib. May God bolster your heart and grant you wisdom for the journey He’s called you to, as He has for us.