Why I Wish I Had Chosen Prenatal Testing by Patti Rice

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.

What changed?

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.

 

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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.

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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.

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 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 VoiceCanary 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.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. sidetracksusie says:

    I, too, had the amniocentesis performed during my fourth pregnancy at the age of 40. I was very often asked why I was going to undergo the procedure when I was staunchly pro-life. I explained, again and again, that our plans were to KNOW, so if we were receiving a special blessing, I would travel the 360 miles to the medical center critically ill babies are life flighted to from our town, and I would deliver there, reducing the risk to the baby of delayed treatment and allowing me to be in the same hospital during my recovery. The concept seemed too difficult for so many to understand; I knew it was the right thing to do, as I had witnessed my cousin’s child’s death due to complications of DS and the delay in getting to a medical center. We did not need to do this, although our son was born seven weeks early by emergency c-section.

    Thank you for sharing this with so many. I’ve too often heard women say they will not have an amnio because they aren’t going to have an abortion, not understanding how the procedure can be used to obtain the best care at the earliest time, and also allow time for education. Again, thank you.

    • Patti says:

      I’m so sorry to hear about the loss of your cousin’s child. Our genetic counselor said she has tried to find some research on how many children born with Down syndrome in smaller hospitals need to be transported to a bigger/better one, but so far has not found anything. Stories like your cousin’s are examples of how prenatal testing can be so beneficial, even for staunchly pro-life mamas. Thank you for taking the time to comment here.

  2. Phoebe says:

    Bravo, mama of 11! I’m wanting to have a large family too.

    Thank you for sharing a different perspective about prenatal testing. It makes sense to me and opens my eyes. As a young woman, I may still avoid prenatal testing, but as I get older and if I continue to have children it makes sense. Blessings,

  3. Our Lily Grace was born in December of 2010, the first child of my 27-year-old daughter. The Down syndrome was a shock to all of us. If we had known about the Down syndrome ahead of time, there would have been NO abortion, but I think it would have given us time to educate ourselves and others about Down syndrome and prepare ourselves emotionally and mentally for the extra chromosome and what this means. Perhaps if we’d been prepared, it wouldn’t have hurt quite so much.
    Lily was diagnosed with Acute Lymphocytic Leukemia at the end of September 2012 and is undergoing chemotherapy for at least 27 months – longer than her age! We are all devastated by the cancer diagnosis and can’t bear the possibility that we may lose our precious Lily, after only two short years of life. We don’t even care about the extra chromosome, we just want our happy, healthy Lily back!
    I will attach a picture of our sweet Lily, in recovery at the hospital after her most recent spinal tap/spinal chemo. Would you please keep Lily Grace in your prayers, that God will give her a full recovery from the leukemia? Thank you.
    I enjoyed seeing your darling Lily! Thank you so much for sharing the pictures and your thoughts on Down syndrome and prenatal testing in your blog.
    Sincerely, Sharon

    • Mom says:

      We had our son in 1995 and the tests were all done and everything was fine. In January he was born a month early and he was Down Syndrome. I have always thought it would of been better to know ahead of time, but the tests showed everything was fine. Our son also had leukemia when he was 18 months old and he is now 18 years old. We were told it is common with Down Syndrome and for some reason that extra chromosome helps and they respond better with the treatment for cancer. He had chemo and has been in remission for 16 years. So good luck and prayers will be sent for your you and your family!

    • Patti says:

      Sharon, she is GORGEOUS. I will absolutely be praying for your Lily Grace, and if you have time can you email me? I would love Lily’s readers to be praying for her as well. Much love to you, Grandma. oxoxPatti

  4. Krista says:

    Beautiful Patti, Thank you so much for sharing.

  5. Libby says:

    As always Patti you speak right to my heart. I’m nodding my head in agreement with you though each step. I totally understand. As always thanks for sharing your beautiful words.

    • Patti says:

      Libby, happy to be pregnant with you, and thankful to have someone going through the same emotions, etc. as me ;)

  6. As much as I hated my pregnancy, and wished I hadn’t known for the first 10 weeks or so of our prenatal diagnosis, once the doctor’s found Ellie’s heart defect, I was SO grateful. And once they found Ellie’s double bubble, I was hating my pregnancy for what I knew, but SO grateful I could make a decision about her treatment in advance, rather than in a haze post-emergency c-section.

  7. Robin says:

    I’ve had so many mixed emotions over our surprise birth diagnosis.Two years prior I had testing done with my son,level 2 ultra sound cleared those issues up,so when I went into the next pregnancy I refused testing.We had a few ultra sounds but only for gender,which was wrong because we thought we were having a girl who turned out to be a boy.Looking back at those ultra sounds I can see short limbs,flattened nose bridge.When we had our home birth I knew before I ever saw his face,I could tell his texture was different when I touched him.As I held him in my bed I cried to my midwife that it was how it was supposed to be,God brought us thru it exactly how he wanted and I was thankful I didn’t test.I avoided stress and fell in love immediately.But then I went thru extreme guilt for not testing,I felt as tho I was irresponsible with my child’s health,he could have been very I’ll and things could have gone very wrong.I should have been prepared and I wasn’t.He was healthy,also due to Gods hand.I wasn’t lucky,I had Gods hands all over us at that time.He knew I would accept and love this child because we had that same discussion 2 years prior.I asked God just make him healthy please.I am pro choice but I do feel testing is important to prepare,not to abort.Im still happy things turned out the way God intended,I never grieved or mourned because I got the child I asked for,healthy.

    • Patti says:

      It’s so interesting to read so many different experiences, and also fabulous to see the grace of God to carry each of us through. Thank you for sharing your journey here.

  8. Erin says:

    In 2004, the reason I didn’t have a diagnostic test is because an amnio was my only choice, and the miscarriage risk with an amnio at my hospital was 1:150. I think I would have felt better about one of the diagnostic blood tests.

    • Patti says:

      This was the same reason I chose not to have an amnio. Mixed with the fact that I despise needles.

  9. Mummalove says:

    I loved reading this reflection, Patti. The months following the nuchal test (where we were given a ‘high risk’ of having a child with Down syndrome) and then positive diagnosis of DS through amnio were amongst the hardest I’ve ever been through, and the hardest experience our marriage has had to endure to date. It also raised some very difficult questions that challenged us both to the core. But I wouldn’t change a moment of it, for it enabled us to prepare ourselves emotionally for the diagnosis, to grieve, to share the news with our family and friends and allow them to grieve, to prepare for any potential health concerns, and then to welcome our beautiful boy with the most amount of love and excitement that he deserves (a lot!). He delights me more with every day and I feel blessed to have him in my life.

    • Patti says:

      Love this perspective, and it’s exactly what I think we would have had if we had known ahead of time.

  10. Denise says:

    I was told I had a one in four chance to have a baby with Ds. We didn’t do the amnio but in my heart I knew. I knew from 13 weeks pregnant on. It did make for tough pregnancy although, I did do lots of research and we had told our 3 other children it was a possibility. Even knowing early on I don’t think your more at peace because even if you know you still really don’t know so many things, there are still unanswered questions about your babies health, how people will react, how your older children will be affected.
    Patti, I really love reading anything and everything you write. Your an amazing woman and mother. I know God has put you in my path for a reason!
    Amy Thanks for sharing these woman’s stories!

    • Patti says:

      Denise, thank you. I have heard so many say that they had a “feeling” about their unborn baby, and I know I did as well. Maybe God is better at preparing us than we are :)

  11. Thank you, Amy, for this conversation. And thank you, Patti, for sharing your story. Lily is a beautiful little girl. My husband & I chose to find out whether or not our daughter, Sofia, had Down syndrome, when it was clear there were a number of indicators showing that she most likely did.

    For someone who is strongly pro-life, this was a difficult decision for me. However, we were presented with the information from our genetics doctor that if we did find out conclusively, we’d be able to know if our daughter had other medical concerns & be prepared to meet those. Also, knowing if she would be a high-risk delivery would determine the hospital at which she’d be born. There was risk from the testing, however, from the doctor’s perspective there may have been even greater risk from potential medical issues. Finding out, for us, enabled us to do what we believed was providing the best care for our daughter.

    There was a grieving process that occurred once we found out she did have Down
    syndrome. However, by having gone through that grieving process in the weeks
    that followed the diagnosis while I was pregnant, there was no grief when she
    was born. Her birth was actually a time of much joy and peace for our family. We
    simply couldn’t wait to meet & hold her.

    Having made the choice to do the testing, we did experience some questioning &
    judgment from some pro-life friends and acquaintances, even after explaining
    what we’d been told by the physicians. The idea that doing the testing might
    allow parents & doctors to provide needed medical care for the baby was
    foreign to most people I encountered.

    After having spoken with many parents of a child with DS, it seems that most experienced a time of fear & grief, whether it was before or after the birth. Most of those parents were given a host of possible negatives of having a child with
    DS, with virtually no mention of any positives. If more balanced information was
    presented to new parents, perhaps fear would be abated, enabling parents to
    celebrate the life of their child, with or without DS.

    My daughter, Sofia, is now 7 years old. She has been & continues to be a joy
    in our lives.

  12. Joede says:

    My sibling is special (with downs) and her life has been fraught with
    challenges that most of us do not have to cope with. Additionally downs
    syndrome is associated with cardiac anomalies and leukemia. Prenatal testing is
    a wonderful medical advancement and it is so sad when people’s belief systems
    prevent them from making compassionate choices. We need to free
    ourselves from the indoctrination sourced from the writings of primitive
    people who, understandably had less scientific knowledge than today’s average 6th grade school student (this applies to schools which encourage the unfettered delivery of knowledge).

    Religion emanates from the human tendency to deny death; the intention to believe that the homosapien is the superior species on this planet, and the urge to apply a purpose to our existence. It is therefore tragically ironic that religions overwhelmingly contribute to many experiencing psychological and physical pain, and to the artificial prolongation of life using futile medical interventions whilst ignoring the individuals’ quality of life. Additionally religion promotes bigotry, division and even conflict; is heavily reliant on the brain washing of children; disempowers women and promotes poverty in many countries leading to millions of deaths.

    The majority of humans evidence they possess little regard for the welfare and rights of those who cannot self-advocate. Please consider the daily, cruel treatment of non-human animals ( other animals are sentient and also experience pain, fear and grief). Humanity’s predominantly negative attitude to those who cannot speak up for themselves directly contributes to the frequent incidence of abuse of the aged and disabled.

    For the sake of those who cannot speak for themselves ( & for those who can), I sincerely hope this comment may even plant a seed in the minds of those of you who are questioning the validity of your belief.

  13. Lalybro says:

    Thank you for this post!! It has helped me to know that I should try to prepare our children as well that there’s a chance our baby could be born with T21. We were given a 1 in 55 chance based on my age (35) and an elevated nuchal. All of my blood tests have come back with low risk but we have seen fluid around the heart at a heart eval and it was gone last week. Even so, I need to talk to my children (daughter, almost 6, son,4, and daughter,2). Thank you!!


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