Diagnosis

The next day we drove back to Spokane for the scan and a chat with Tanya. I felt the emotions of the day brimming at my eyelids as we drove and talked.

When a good friend had called me a couple years ago to tell me he had ‘just the guy’ for me, he described Russ by saying, “He’s a Jesus guy, just like you.” He was right. I’d prayed that if I were to be married, it would be to a man who would lead our family in faith. I dreamed that together, we could share God’s love and life as the strongest bond between us. God fulfilled that desire by bringing Russ into my life.

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As we drove that day, his spirit lifted mine from the trench of pity and pain that was sucking me in. His voice did not quiver as he said with conviction, “We aren’t just going to be average parents to this little precious one, we are going to be the very best we can be.” A few miles closer to the clinic, after a conversation about God being in control us desiring more than to be ‘fair-weather Christians’, we agreed that our faith in God was our lifeline for every corner of our lives, not merely a religion we associate with. And in the midst of our conversation about our babies likely diagnosis, Russ said these words, “This is where faith lives.”

When those words travelled from my ears to my heart, I could sense the Holy Spirit in the car with us. It was as if we were embarking on a journey that would not only require faith but would create in us as a couple, a deeper, vivid and living faith from which to be parents and continue to experience God’s lavish love for us. And the Holy Spirit was present, affirming that He was near, empowering and comforting us as we stepped forward.

We arrived at the Maternal Fetal Medicine clinic. I felt like every staff member knew our news. We initially met with Tanya again and she walked us through the results of the tests. She wrote in pen over the printed results, 82%. This was our currently known risk that our baby would have Down syndrome. I won’t lie, I’ve never thought 18% held such good odds.

To determine the further likelihood of Down syndrome, they wanted to do another ultrasound to look for ‘soft markers’ of Down syndrome. Tanya explained that babies in the womb can present with particular features associated with the syndrome…which would add to our 82% if found. Flatter facial features, white spots on the heart, shorter than average femur bones and a slightly turned in top joint of the pinky finger were some that she mentioned.

I laid in the dark room, with my belly exposed and the ultrasound wand swishing the goopy gel around in search of our little swimmer. All of the sudden, as I fixated my view on the grainy black and white screen, a little hand came into clear view and waved at me. There it was! The little pinky was turned in slightly- but noticeably. At that moment, 82% disappeared. I knew our baby truly did have three copies of the 21st chromosome.

Following the ultrasound, the doctor met with Russ and I to review the scan. He began to re-explain the purpose of the scan in detecting soft markers and then told us that many of those markers had been found. The white spots on the heart, the shorter arm and leg bones, a glossy look on the stomach and that slight curve of the pinky finger. Each of these markers added certainty to the diagnosis- although none of these could allow him to give us a 100% diagnosis. Only an amniocentesis could provide the genetic verification of that- a procedure where a long needle is inserted into the womb and a sample of amniotic fluid is used to verify the diagnosis. I had sat through this very same procedure with a dear friend and was not keen to undergo it myself!

Russ, being an analytical kind of guy, asked if our % of risk had gone up. The doctor sympathetically nodded yes. Russ, not yet satisfied, asked if it was up to 90%. The doctor shook his head and said, “Oh no, more than that…I’d say 98 – 99% really.” I looked at Russ, as I watched his heart letting go of the last hope that this was all a dream. I offered, “Honey, he can’t legally say it’s 100% because we haven’t done the amnio’….but essentially, he is saying it’s for sure.” I looked at the Doc to be sure I wasn’t mistaken, but he nodded his head in agreement and then offered some comforting words to us.

He suggested that we think about and then decide what we would do with the results. I’ve read many statistics about prenatal testing and the subsequently frequent termination of babies with Down syndrome. Statistically, 90-95% of babies diagnosed in utero are terminated. He had laid out a long list of complications which our baby may face, because of the diagnosis. However, our hearts knew that this special and unique life was not ours to end. It was ours to steward and was entrusted to us by the Creator, who breathes purpose into each life. We told the Doctor we would not consider termination.

I was thankful that at that moment, he said, “That’s good, we always advocate for life.” Life is what we have. A tiny, intricate, sacred life growing steadily inside of me. And we have the redemptive, abundant, powerful life of Christ, coursing through our family. We left the clinic knowing we would never be the same again. Our lives had changed forever. As the weight of the day began to settle in, and the silence between us became vulnerable, I heard Russ’s words. “This is where faith lives.”

Results

As promised, Tanya called me back on Tuesday. Her call came late in the afternoon and Russ was home. I handed Madeleine to him as I glanced at the familiar number on my phone and I perched on the couch, looking out the window. I half wished I’d grabbed our calendar to remove the guesswork from my expectation of a re-scheduling of the blood test.

In the very short time I’d had with Tanya, I already appreciated her clear and informative approach to genetic counselling. It’s so rewarding to see someone so well suited for their role. Her voice was friendly and we went through the standard niceties of how are you, etc. Her tone shifted ever so slightly and she asked, “Is this a good time, do you have a few minutes to talk?” The answer to her question came out of my mouth, as my heart suddenly raised a red flag and began to wave it in the pit of my stomach. “Yes, now’s a great time….Russ is home.”

I tried to compensate for my gut reaction by focusing the conversation on the reschedule. “Are we going to have to reschedule?” I asked, suddenly hopeful the answer was yes.

“Actually, the lab has sent the results, and the reason they are late is that they wanted to verify and be sure of their findings.” Again, my voice carried a tone of confidence as I heard myself respond, “Oh, okay…..they have actual results?” Inside, my truest self knew and the red flag no longer waived, it just stood, certain of the news that was about to be heard.

The bliss of not knowing suddenly shattered as Tanya gently, yet clearly explained, “The results are showing a high risk of Down Syndrome.”

There it was. The bliss was gone and the words Down Syndrome took it’s place, causing my mind to grasp for some level of certainty. I suddenly became conscious that Russ was holding Madeleine and listening to my side of the conversation. I don’t know why that silly voice of mine continued to carry on the conversation as though there was nothing noteworthy happening…..or perhaps it conveyed a fore-knowledge of the news. Almost cheerfully, I said, “Oh, alright. So now what?”

I could hear Tanya’s slight surprise at my tone and acceptance of the news. She didn’t miss a beat though, “We would like to have you come back if that’s possible because we will do another scan to determine a more accurate level of risk for Down Syndrome. Could you come in tomorrow?”

When I hung up the phone, I could feel a numbing sensation washing over me. Russ looked at me inquisitively and all I knew to say was, “It’s not good hun. It’s Down syndrome.” There was a nonsensical thought that circled my mind as I looked at Russ absorbing the news. Am I the cause of this? It’s my fault he now has to face this. What is he thinking of me right now?

Of course, those thoughts were straight from the destroyer of all good things. They were planted to bring shame and drive a wedge between me and Russ. But Russ’s gentle and tender love immediately removed those fears and silenced the enemies voice. We sat together, I cried and we just let the likely possibility sink in. Our baby has Down syndrome.