October 15, 2014

The Darkest Days: Our Lives Become a Sermon {Prenatal Down Syndrome Diagnosis}

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This is the fourth part of a series about finding out our unborn son has Down syndrome through an abnormal ultrasound and a Harmony blood test.  I wrote throughout the month and have kept every piece in tact so that it may help someone going through the same thing. Read part 1 here, Part 2 here and Part 3 here.

I always appreciate when ministers adds stories into their sermons. You know, those little anecdotes about people they’ve come across in their lives. Whether they are stories of tragedy or triumph, I think they make the message more relatable. As much as I enjoy hearing these stories, I never thought my life would become one.

Let me give you some background. Four days after receiving the Harmony Blood Test Results that were positive for T21 (down syndrome) we had to go see a high-risk specialist.

 They did an ultrasound that lasted for nearly an hour. They saw nothing indicating down syndrome except that the right ventricle of his heart looked slightly enlarged (50% of babies born with down syndrome suffer from heart defects.) The doctor told me that if I were her sister, she would tell me to get an amniocentesis. We were shocked to hear this because our last doctor lead us to believe that the Harmony test was so accurate that most doctors won’t perform amnios (a topic for a later blog post.) So, we decided to go ahead with the procedure.

About a week later, as we were waiting for the results, I wrote the following message to our family and close friends. It’s part of this letter (they are in bold) that made it into two different sermons in the Atlanta area.

 

I’m only sending this message to the people I’m closest to. I’ve had some of you reach out and I know you want to know how we are doing, and the truth is, is that it changes every hour.

 Last week, after getting the results, I felt pretty much out of hope. This week, after doing some research and remembering a dream I had 2 weeks ago, I’ve started to feel hopeful again.

 Andy has done a lot of research, including this article http://thednaexchange.com/2013/07/11/guest-post-nips-is-not-diagnostic-convincing-our-patients-and-convincing-ourselves/ (if you’re interested) and others about how this genetic testing we had done is not the end-all-be-all that the first doctor told us that it was.

 I also had a dream 2 weeks ago the night before getting the second ultrasound done. It was one of those dreams where monsters were involved and we had to dodge the monsters and go through obstacles the entire dream. The very last scene, we entered a room and there was a baby boy in a baby carrier. I remember every detail of his face. His eyes were closed, but his nose was more pronounced than Violet’s, his face was longer and his philtrum (those two lines that run from your nose to your mouth) was very pronounced. He didn’t have Down syndrome. I felt confident walking into the ultrasound the next morning because I felt that I saw my baby’s face in that dream… The ultrasound picked up nothing abnormal. We have since had a third ultrasound that also picked up nothing abnormal.

After remembering this dream earlier this week, I prayed that God would send me another one. I also prayed that if this amnio was going to come back with bad results that he prepare me.

I had a dream that night. Here’s dream #2. Andy and I were on a plane. He had Violet on his lap and I had a random baby on my lap, I was still pregnant. Looking at the baby made me feel hopeful. Then the pilot came over the speaker and said he was not the one flying the plane, but that the computer was flying the plane and that sometimes it flies the plane lower than normal. I looked outside the window and we were flying really low and I got scared. Unfortunately, Andy woke me up at this point, so I don’t know how it ended.

I went to an on-base bible study the next morning. We were split into prayer groups.  I told my group about our situation. And one of the girls told me that every test her cousin had, indicated that her daughter would be born with Down syndrome. Her niece just celebrated her 3rd birthday and is completely healthy, no down syndrome or other health issues. Before I left, I asked her if her cousin had an amnio, and she said yes and that it had come back also saying she would have DS. It felt like maybe I was supposed to meet her. By the way, this woman is intelligent, and someone that I trust.

I can’t be certain if it was God that sent me these dreams or if it was my own hopeful subconscious. Who can be certain? But I feel that if the dreams (and meeting this woman) were from God, that he is trying to tell me that this pregnancy will be a battle, but maybe, just maybe, our son will be born completely healthy.

 Here’s why I am telling you all of this. Even though amnios are proven to be 99.4% accurate, we will continue praying for healing even if this test comes back with a bad result this coming week (obviously we are really hoping and praying for a clean bill of health!). And I know this may sound crazy considering amnios are diagnostic tests, but we believe God can heal him in spite of these results.

So here is where we stand with everything. We know that our son will be a blessing whether or not he has Down syndrome. We know that children and adults with Down syndrome are some of the happiest people on this planet. We know this. We believe that kids with Down syndrome can live meaningful lives, but we do not believe that when God created his perfect world, that he intended for people to have disorders like Down syndrome. We believe this and other conditions and diseases are a product of living in a fallen world. We do not believe that we are special parents and that’s why God sent us a child with special needs. We believe that if he has this disorder, it is because he is a victim (just like a cancer victim or anyone that has been affected with an illness) of living in a fallen world.

So, this is why I am writing you. I’m writing you to let you know that we still have hope. If this amnio comes back with bad results, we will continue praying for healing, but we will also start preparing. We cannot predict God’s will, so we will prepare for our son’s life as if he has Down syndrome and as if he doesn’t.

 We are asking you to please pray the same thing. Please pray that first, the amnio comes back negative for Down syndrome! But if it comes back with bad news, that God will heal our son. We believe God is capable of anything, including miracles, and we hope that you will pray for God to change his genetic code and heal him. And if he won’t, that he please prepare Andy and I for the road ahead.

I realize that this sounds like I’m a religious nut-job. It’s the kind of crazy faith I would have rolled my eyes at several years back. But the one thing we know for sure is that God is capable of anything, but whether he is willing or not, is a different story. All we can do is ask, beg, plead for him to intervene, and we hope you will too.

 

About an hour after I sent this letter, our former pastor Dan called me and said “I think you have it exactly right.” In the darkest moment of my life, when all I had were questions that started with “why”, those were the most reassuring 7 words I had ever heard.

Dan included part of the letter into the end of his sermon. Hace, another close friend of ours who happens to be a pastor, did the same. Both sermons had different messages (the first about nourishing your faith, the second about God’s sovereignty) and both brought me to tears. I remember telling Andy that if nothing else good came of our situation, that at least there was this… that hopefully at least one person sitting in those pews was impacted by our family. But now I know that this is just one of the many good things to come from our son’s life.

Dan Brown’s sermon at Dunwoody United Methodist Church: https://www.youtube.com/watch?v=H4ondRi1zCI

Hace Cargo’s sermon at Brookhaven Presbyterian: http://brookhavenpres.com/resources/sermons/?sermon_id=46  

This is the fourth part of a series about finding out our unborn son has Down syndrome through an abnormal ultrasound and a Harmony blood test.  I wrote throughout the month and have kept every piece in tact so that it may help someone going through the same thing. Read part 1 here, Part 2 here and Part 3 here.

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8 thoughts on “The Darkest Days: Our Lives Become a Sermon {Prenatal Down Syndrome Diagnosis}”

  1. Jillian,
    My daughter is 17 this year. When I was pregnant with her at the advanced age of 29–which I didn’t realize was old but my Docs were quick to point out was–even though the sonograms were normal, every single test they did including the amnio was abnormal. In fact, one of the specialist I saw got annoyed with me when he found out I tracked down the person who actually separated the cells for the genetics testing to inquire how likely it was that the testing was flawed. He told me to be prepared for a child who was a mosaic as 6 out of the 13 cells cultured showed a flaw in the same gene. We were devastated and spent the rest of the pregnancy in despair eating up every bit of information we could find. Of course it was also a blessing and a curse thathat I’ve spent my entire adult life working with a developmentally disabled population and knowledge can cause more anxiety sometimes. That was a long time ago and I’ve forgotten more than I remember about it but one thing I can tell you is, other than being an amazingly good teenager in every aspect of the word, my daughter is perfect. No genetic abnormalities at all. Despite the statistics, science is not perfect. Hang in there.

    1. Thank you so much Leah. Whether or not he has down syndrome, I have a lot of hope for the future. Thank you!

  2. You can Believe your boy is gonna be perfect..So many praying..”If 2 on earth agree”..You are wonderful caring people and deserve only the best..BELIEVE in miracles…hugs and love Benfield family..Sue and Ray

  3. While I don’t know you, I stumbled across your blog on Facebook. I am also pregnant and your story has truly touched me. Not a day goes by that I don’t think of you and your family. Praying for healing for your sweet boy. No matter the outcome one thing is for sure, Anderson is going to be one lucky little boy to have such amazing parents!

    1. Thank you so much Nancy for reaching out and thank you for your prayers. I hope you continue to follow along@

  4. We went through a similar situation two years ago when I was pregnant with our youngest son. Through abnormal ultrasounds, bloodwork and genetic screenings, we were warned our baby probably had Trisomy 18 and would be “incompatible with life.” We were even given the option to terminate the pregnancy. While shocked and saddened, we confidently told our doctor we would not do that and vowed to fight for our baby whatever time he had.
    After many grueling weeks of waiting and many, many tears we delivered a healthy baby boy with no genetic disorders at all.
    I say this to encourage you-not with false hope or another “that happened to us” story-but to say I think you’re doing great. As mamas, fighting for our babies is part of the job so fight hard, Mama! I know this is the hardest thing you’ve probably ever done but you’re doing well! God is writing a beautiful story.

    1. Thank you for sharing your story with me, Melissa. Curious, did you have an amniocentesis done? I so appreciate your words of encouragement!

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