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.

Birthdays

Above is a picture of my 36th birthday (looking like I’m telling campfire ghost stories- ha!)….and next to it is a picture of my very first birthday. The years between these photos have been so rich and so jammed-packed with adventures, that I don’t necessarily feel OLD….rather wonderfully LIVED. Is that a thing? Heck Yes!

At Hillsong Leadership College, Brian Houston (the lead pastor) would consistently remind us that THE BEST IS YET TO COME. This phrase became a mantra for me and a reminder that God would never be finished with me.  I’ve lived with persistent anticipation for what lies ahead…and I’ve rarely felt that my ‘golden years’ were behind me. Today as I look ahead, I am certain this is still true.

The statistics of risks associated with maternal age, do not communicate this same enthusiasm for baby endeavours. At 35 years old, a woman steps into a world where the numbers begin to tumble and risk of having children with chromosomal abnormality climbs. Although pregnancy is trending higher among 30+ women…we are considered ‘advanced maternal age’.

down-syndrome-Maternal-Age-Chart

cdc risk chart

Source: CDC.com

When I was 23, I moved to Uganda. I spent 7 1/2 years pioneering a Non-Governmental Organization called Cherish Uganda. If you’ve known me- you’ve likely heard my story. A rebellious coming of age landed me on a Greyhound bus at 18, with blackened hair and heartbroken dreams. I was returning home from a spring and summer of tree-planting in Northern BC and my heart longed to unstick my feet from Canadian soil. I sensed a purpose that was ‘larger than me’ somewhere in a place I’d never been. I felt certain that I had been missing out on God’s best for me. I had run from Him because I had convinced myself I could map a better plan myself- but it had led me to the emptiest place I’d ever been. So as I sat on the bus, I turned my thoughts to God and the plans He had for me-which I’d all but abandoned.

“God, if you still have any possible use for me…if I am not too far gone, for you to redeem… I surrender my life to you…..whatever you want for me, I will do”. The sunlight streamed in through the window and I looked out at the spectacular scenery of Banff National Park, listening to the background humming of the bus. I looked down at my purple hair-dye stained hands as they held my CD player which was perched on top of my journal. In that quiet space, I heard a word whispered to my spirit, “Cherish”. It wasn’t a plan, it wasn’t a rebuke or even a conviction….it was a promise. God was not done with me and more striking, He was close and not distant from me. In the pitiful state I was in, there He was.

My life turned at that moment. It was the kind of turn that resembled a 180-degree change of heart…a true repentance. I unstuck my feet from Canadian soil and travelled as far from home as I could possibly get. Hillsong Leadership College in Sydney Australia was my first stop. There, I met my gorgeous friend Emma. She is a British, sanguine, firecracker of a girl, who I quickly grew to adore! We shared a room in our college house, threw pancake and champagne parties, skipped classes and found a passion for Christ and His church during our years at Hillsong.

Emma and I

Our friendship took me to England after college, where Emma was working as a youth pastor for a church called Christian Grown Centre. I arrived in September 2004 and worked alongside Emma- where we continued our quest to see God’s Kingdom realized in the lives of young people…whilst being adamant not to conform to a boring, religious mould that we so detested. It turned out, we were in the right place- because when I met Rick and Bev Murrill. They were the senior pastors of the church and leaders of a movement of church plants throughout the UK called Christian Growth International.  It didn’t take more than one conversation with them to figure out that they were faith-filled, mould-breakers themselves!

A few weeks after I’d arrived in England, Bev Murrill visited Uganda. She was taking a team of women to pray for and encourage the staff of Mildmay Uganda- a hospice for children living with HIV. The vice-president and founder of this centre was a tenacious British woman named Ruth Sims. She expressed to Bev that her team were struggling to face the overwhelming number of deaths among the children they attentively cared for. While Ruth took Bev through the hospice, Ruth explained that children without families were unable to begin medication because they would have no caregivers to support their stringent drug regime through childhood. So, although the life-saving medication was available to them, children were dying for lack of family and caregivers. Even orphan programs refused to provide care for these children, because of their HIV status.

God stopped Bev at a small bed, where a baby with HIV laid whose name was also Rachel. “Bev, you could DO SOMETHING about these children, if you want to.” These words could not be quietened in Bev’s heart as she returned to the UK and she returned with a catalytic anointing to speak in faith about an unseen response to God’s urge to ‘do something’.

baby

The details of how God’s plan unfolded through Cherish Uganda would take me a book to share fully. In short, I spent the next 10 years of my life pouring my heart and soul into the team and work that developed into a village of rehabilitation homes, a health centre, schools and an agricultural farm for courageous children who would overcome stigma, abandonment and abuse- to become symbols of HOPE for others living with HIV.

Kids

I arrived in Uganda with a couple suitcases full of good intentions. I left with a heart made so rich by the grace and love of God. His purpose and path for me included undeserved leadership which was a growth experience, an incredible group of friends whom I was honored to call my team, a church family (worshipharvest.org) who discipled me into the outrageous grace of God….and friends all around the globe, who joined us to be part of this amazing story of redemption.

I’m writing this short excerpt of my days in Australia, England and Uganda, to remind myself that the years I invested in this cause would NOT have been better spent having children of my own. I would not change those years or trade them for anything else. I bring to my marriage and family the witness of a miracle working God- one who responds to faith. The thousands of days I spent without a family of my own, were days that prepared me for them. Those years were PACKED with adventure, pain, Jesus, love, friends and the evidence that God uses our own brokenness for His plan….in which we become whole.

As I face a medical world that correlates my age with maternal risk….I look back and think that a greater risk would be entering motherhood without the certain knowledge that God does miracles, He heals, He loves, He provides and He holds our futures perfectly in His hands. As Russ and I embark on a new parenting chapter of having a little girl with Down Syndrome, we are full of faith for her life….knowing that He who has begun a good work (5 months and counting….), is faithful to complete it. Our little girl’s diagnosis does not lie outside of His perfect plan.

So bring on the birthdays….the best is yet to come!

Rachel

If Cherish Uganda caught your attention, please visit the website to check out the life-changing love that continues there today!

 

 

 

Tests

 

We told our families soon after we knew we were expecting and got the usual jokes and prods like, “Wow….not wasting any time eh!?” We laughed with them in agreement, because the truth is- we don’t have time to waste. I’ve never had a sense of my ‘biological clock’ ticking…although we both knew if we wanted a little crew of kiddos, we couldn’t put too many months between pregnancies.

At my 12 week ultrasound, I asked the technician if the scan included a nuchal translucency (NT) test. This testing is an early way to detect chromosomal abnormalities in the baby (by measuring the fluid at the neck of the baby) and it had been a standard part of my prenatal testing during my first pregnancy in Canada. She informed me that the scan didn’t include the test.

Shortly after, we sat with the OB who reported that everything in the scan was looking healthy and normal. Her eyes were very kind and communicated the shared sense of thrill that a perfect new life brings. I held my ultrasound photos in one hand- proof that there was, in fact, a little human growing within me! It was all great news and I allowed it to put my unspoken, nearly unconscious concerns to rest. I questioned the absence of the NT testing and the OB suggested that we consider NIPT testing- a relatively new and far more accurate blood test which could be done at any time during my pregnancy. The costs for the test would not likely be covered by our health insurance and I would have to go to Spokane to have it done. I didn’t expect we would opt in, but when I looked up at Russ, who was shifting back and forth with Madeleine in his arms, I saw a look on his face that I’ve come to recognize as a decisive, Spirit-led, decision-making look. He returned his eyes to the Doctor and said, “We would like that test, I think it would be good to know.” Although I was surprised, I agreed wholeheartedly and the test was arranged.

I arrived at Sacred Heart’s Maternal Fetal Medicine clinic on January 4th for a Non-invasive Prenatal Test (NIPT). I was 14 weeks pregnant and only just starting to show evidence of a bump. A friend had come to help me with Madeleine. As we sat in the waiting room, I looked at the other pregnant women and wondered what circumstance had brought them there. My mind wandered into that query and I could only imagine their worse case scenarios. I, on the other hand, expected a one-time visit and confirmation that our little one was developing perfectly- just as Madeleine had.
My first appointment was with a Genetic Counselor named Tanya. She graciously explained the testing, it’s accuracy and then proceeded to educate me about possible chromosomal abnormalities that could be detected. I had sat through this very same spiel with a dear friend, only a couple years prior, and it was like a strange flashback. The graphs and tables of age-related risk for Trisomy 13, 18 and 21(Down Syndrome) were initially intimidating. The fluky possibility that a particular chromosome could triplicate itself, instead of duplicate, seemed so random. When Tanya explained that my risk was less than 1%, I lent into my optimistic nature and saw only the 99.5% chance that my baby would be typical.

Trisomy 21 Karyotype Female - Copy
The blood draw and ultrasound were uneventful- although I love every chance to see my baby swimming and bopping around in my tummy in real time! The Doctor then reviewed the ultrasound with me, assuring me (just as I had expected) that everything looked very normal. I asked him if the back of the neck had been measured and he explained that although I was a few days outside of the ideal range of pregnancy for that test (10-14 weeks), the neck was measuring normally. If there were any reason for doubt on my way into the clinic, it had all evaporated by the time I left. The staff had each been so personable and caring, and yet, I never intended to see them again. I would get the blood test results over the phone in 7-10 days as a final confirmation.
The next week I called Tanya to ask if my results had arrived. She had asked me to prompt her on day 7, so I did. The results weren’t in and she told me to call back the next day, Friday, when the tests would most definitely be back. I wasn’t feeling nervous about the results, so I waited until the latter part of the day to call and ended up leaving voice messages requesting the results. My call was not returned and the day was nearly done, so I knew I wasn’t going to have the results until Monday. Sure enough, on Monday I received a call from Tanya, apologizing for the wait. She said the results still had not arrived and that the delay was usually a precursor for a “non-result”. This would mean I’d have to return to Spokane and have a second blood draw, as not enough genetic material was collected the first time. She was going to follow up with the lab to confirm this was the case, but she told me not to worry…and apologized that I would likely have to drive back to Spokane.

Taking Madeleine and driving back to Spokane in the middle of winter was not on my bucket list for 2018. I didn’t know then, that the following 24 hours would change the rest of my life altogether.

Rachel