Patti Rice is my first guest in what will be a series of guest posts to hear from women who have had a wide range of experiences with prenatal testing. Check back in on Thursday for Meriah Nichols, who writes about why she regrets her amniocentesis, and next week to hear from a woman who decided to terminate her pregnancy after a prenatal diagnosis of Down syndrome. And if you’re interested in these topics, consider buying my new ebook What Every Woman Needs to Know About Prenatal Testing: Insights from a Mom Who Has Been There for any ereader.
“I would like you to take a look at these statistics,” said my obstetrician, sliding a sheet of paper across the table to me with a concerned smile on her face.
I glanced down at the numbers, noted the words Down syndrome, and slid the paper back across the table.
“I’m aware of my elevated risks for chromosomal issues,” I smiled back, “but we’re fine with whoever God gives us.”
This conversation took place eight years ago; I was 36 years old and pregnant with our eighth child. I declined all prenatal testing, which at that time included a quad marker screening and an amniocentesis, just as I had done with all my previous pregnancies.
Fast forward to last month, where at age 44 I am 20 weeks pregnant with our eleventh child…
My husband and I traveled an hour south to Sacred Heart Medical Center, for the sole purpose of finding out as much as we could about our unborn child. We requested a level II ultrasound, and we asked the genetic counselor to make a note to the technician to look specifically for any heart problems, or any other health concerns related to a chromosomal issue. I underwent the new blood test to detect Down syndrome, other trisomies, as well as any sex chromosome complication, and I was told that results would come back to us in ten business days. We want to be fully prepared with information, so that we know which hospital is best equipped to take care of our baby when I deliver.
Are we still fine with “whoever God gives us” ?
I have two answers to those questions.
Experience changed us…and we are absolutely fine with whoever God gives us.
Three years ago this month I gave birth to our tenth child, Lily, who arrived somewhat unexpectedly with Down syndrome. Many markers had shown up on ultrasounds during my pregnancy with Lily, the strongest one being a possible AV canal defect. But when a 32 week ultrasound showed the heart issue resolved, my odds for a baby with an extra chromosome decreased significantly. We decided not to share any concerns with our six youngest children, as we didn’t want to burden them unnecessarily. Our oldest three were all adults, and because we felt that they could handle the news that their baby sistermight arrive with a little something extra, we gave them what information we had.
What I experienced during the moments following Lily’s birth helped shape my view of prenatal testing today. The days following those moments cemented in my brain a strong conviction that information and preparation are not contrary to trust in God ~ in fact, they can go hand in hand.
I knew the moment they held up my little girl that she had Down syndrome; the features of her tiny face, combined with her shortened limbs left no doubt in my mind. I didn’t experience grief or despair in those moments; I was filled with an overwhelming urge to protect my baby from what anyone might think. I was in love – completely head-over-heels in love, and no amount of information could have prepared me for that.
However . . . my older children shared a different experience. My daughter Mackenzie delivered Lily while our doctor stood beside her . . . Kenzie said from the moment she helped pull her tiny body from me, she knew Lily had Down syndrome. She smiled and laughed with the rest of us, but when Lily began to turn blue and required oxygen, Kenzie sensed something else was wrong. She turned to me, grief and fear etched on her beautiful young face.
“It’s going to be okay,” I smiled through tears at her ~ because I knew she knew.
My sweet, brave seventeen year old collapsed on my chest on the hospital bed, convulsing in sobs. “I just don’t want anybody to make fun of her,” she cried, as I stroked her hair and tried to take away all her pain with my words.
Behind me I could hear our nineteen year old son crying softly in a chair, his face buried in his arms.
This was not what I had expected. We were not fine.
Lily’s oxygen issues could not be resolved at our small town hospital. As a result, our doctors told us she would have to be transported to OHSU, two hours away from us. I was not able to be transferred as a patient, due to our insurance. My husband was to ride with Lily in an ambulance, while I recovered overnight.
We suddenly realized we had not yet told our younger children about Lily’s diagnosis. As the ambulance was on its way, we had ten minutes to usher them into that little NICU and tell them words that would change their lives.
I blogged about those moments here…that window of time is forever etched in my mind. Because we hadn’t prepared our little ones with information about Down syndrome, because we had “spared” them any unnecessary burden, because we didn’t give them a chance to know what we know now ~ that life with Down syndrome is a beautiful thing ~ we had ten minutes to break their tiny hearts and try to put them back together again. And because Lily had to spend a week in the NICU two hours away from them, we were not able to be the comfort to our children that we needed to be.
The moment they took Lily from my arms was one of the hardest moments I have ever faced. I cried, I pleaded, I begged my doctor to let me go with Lily ~ I had never been separated from any of my babies at birth, and I felt completely out of control.
Lily spent the night in the NICU in Portland, undergoing a blood transfusion/exchange procedure. Because she had arrived three weeks early, she was very tiny and had a difficult time taking a bottle. When I finally arrived at OHSU the next day, she was hooked up to oxygen, an IV, and a heart monitor. My little baby was almost unrecognizable for all those wires. That night, spent alone with my husband in the Ronald McDonald house next to my hospital, I spent hours crying on the phone with a friend. Exhaustion and reality were all catching up to me, and being away from Lily was prohibiting that crucial bonding time.
How different things would have been, had we known.
If the new test for Down syndrome had been available during that pregnancy, and had I taken it, I would have delivered my baby at OHSU. I would not have had to be separated from Lily, I would have been recovering in a hospital room across the hall from her. My older children and younger children alike could have had time to become educated about Down syndrome, to meet other families who had walked this way, to read blogs and see photos, to watch videos and possibly join a support group…we would have gone through any grieving process before Lily was born, and been ready to embrace her extra chromosome with open arms.
Because although we were all head-over-heels in love with Lily, we did not have a clear picture of what Down syndrome meant…and a prenatal test would have been key to getting that picture ahead of time. And in my experience, that key could have spared us a lot of anxious moments.
And yet somehow, God brought us through.
Somehow, despite our lack of preparation, despite our desire to rely on faith alone, resisting any tests that might “prepare” us for a diagnosis of Down syndrome, somehow God brought us through. That’s what the grace of God is all about, isn’t it? “In our weakness His strength is made perfect.”
And today we can look back at those moments, and see the grace of God carrying us through. Today we know that our fears were for naught, because Lily is the best thing that ever happened to our family. She has every one of her siblings, and her mama and daddy too, wrapped around her crooked little pinkie. She charms the socks off everyone she meets, and her joy is so evident, it’s contagious.
“I have good news for you,” said the genetic counselor, when I answered the phone last Friday. “No Down syndrome or other chromosomal issues,” she told me, the happiness in her voice undisguised.
I thanked her politely, and hung up the phone…and turned to kiss the sweet face of a little princess with designer genes sleeping beside me.
Lily has changed us all.
*As a pro-life mama I have many concerns regarding the effects of a test for Down syndrome that is now available in the first trimester of pregnancy, the main one being a possible increase in the termination rate in our nation for babies with chromosomal issues. I’ve addressed those concerns at length in a series on my blog; some posts that highlight these concerns are We Have a Voice, Canary in the Coal Mine, and Shining a Light on Prenatal Screening. The post above is an example of how I feel this test can be beneficial, and for the sake of brevity I did not address my concerns with any negative impact.