The Phone Call, The Day, and The Doctor’s Office

JD walks into our room and hands me the phone with a slight look of concern on his face. “It’s for you,” he says.

Hello?

Hi, Anne, this is Kimmie from Dr. Yazawa’s office. I have your results back from the blood test you took at your last visit.

Deep breath… OK.

Anne, the results are abnormal. Your blood count shows positive for down syndrome and we would like to schedule you an appointment tomorrow. The appointment will consist of a meeting with a genetic counselor, an ultrasound, and if you choose, an amniocentesis test.

The test shows what?

That your blood count reveals a high risk for carrying a downs syndrome baby. Does tomorrow at 2:30 work for you?

Fine. That will be fine.

I will schedule it then. When you go in, you will meet with a genetics counselor who will share with you more about the test results and answer any questions you have. Then they will do an ultrasound to check for abnormalities, which will be followed by an amnio.

Abnormalities? (did this nurse really imply that my baby has abnormalities? who is she to say what is normal and abnormal?) Will the ultrasound be enough to tell if the baby has downs?

Well, like I said, the ultrasound may or may not be able to detect if the baby has downs. Anne, are you OK? Would you like to speak to the doctor?

Um. I’m OK. Just to clarify, we are only checking on down syndrome – nothing else, correct?

Correct. The test only came back showing positive for down syndrome. Make sure to write all your questions down for the doctor’s visit tomorrow and please feel free to call us if you have any questions.

OK. Thank you Kimmie. Good Bye.

Good Bye.

___________

And then I crumpled up into a ball on the bed and sobbed. JD heard the whole conversation and curled up next to me while I cried a good, long cry.

I’m only 23, I kept thinking. This is the last phone call I expect to get.

JD and I talked for a long time. We would be well suited to have a special needs child, we agreed. We’ve both had plenty of exposure and have said all along that we will love this child no matter what…

We recalled our conversation shortly after discovering we were pregnant…

____________

“You know, everyone always say all they want is a healthy baby, but what if the baby isn’t healthy?” JD comments to me as we get ready for bed. “Does that mean they don’t want it? And who is to say what is healthy and what isn’t healthy? I just want a baby to love.”

“Me too. It would be hard, but I would be OK if our baby is handicapped in some way.”

____________

For the remainder of the day we discussed what it might be like to have a downs baby, how God makes all things complete, not lacking in anything. We talked about how I had just given a talk to my jr. high girls on Psalm 139 – and rather than focusing on body image, I focused on the wonder of God’s workmanship, how it is complete, deliberate, and good. All day long we prayed, “Thy will be done.”

I went through every emotion under the sun as I considered the joy and blessing that comes through people with down syndrome – how we might learn so much about God’s love through a child with downs… and then watched JD’s younger brothers play in the ocean and I had to acknowledge that I hoped our child would be able to experience all that these boys were experiencing… that a baby with downs would be hard and different than what we expected when we first learned we were parents-to-be.

JD’s family prayed for us, and love increased for the baby and between JD and I. We were united as never before in our marriage, more in love than on our wedding day, and both discovered an intense love for our unborn baby.

Later in the day we learned that these tests often have false positives – that many people are told they will have a child with downs when in fact, they do not. We were warned that often genetic counselors will encourage abortion if the baby is downs. I began to wish I had declined the blood test, but I didn’t know at the time what type of test I was taking, exactly.

I had a splitting headache the entire day.

We went to sleep agreeing to pray about getting the amnio. There are risks involved… chance of miscarriage in turn for a piece of information. God would be our peace of mind, not test results.

Waking up, I knew I did not want to take the test. We were keeping the baby no matter what and would deal with whatever came our way. JD felt the exact same way, and we hugged on it.

Driving to the doctor’s office, we talked about how good we felt today. Much better than yesterday. Confident in God’s plan and also confident that the phone call we received did not contain definitive information – thanks to Aunt Kim and Caitlin’s research.

_____________

Hi I’m Tammy! I’m your genetic counselor today and I’d like to go over your test results today,” she was perky, compassionate, and had pictures of her two beautiful boys on the office wall. We instantly felt at ease.

We discovered that the test I took merely assessed my risk of having a down syndrome baby, and that with my blood count, the risk of having a downs baby was only 1 in 223 or .5% Still, my results at age 23 should have looked more like 1 in 1,000 – which is why they called us in. The counselor also explained that there is a 5% rate of false positives – and that with my medical history and pregnancy thus far, I shouldn’t be too worried. She explained that the ultrasound will pick up on down syndrome symptoms 50% of the time, and that an amnio is the only sure way of knowing – but she also mentioned that if our ultrasound is clear, it is only worthwhile taking the test if we absolutely need a peace of mind. We explained to her our position, and that no matter what, we were not going to get an amnio. She was fully supportive and lead us into the ultrasound room.

The ultrasound was amazing. The magnification and detail was absolutely incredible to watch. We even got to see the baby in 3D. The baby weighs in at 6 oz. and measures just over 5 inches – right on schedule. The heart looked strong, the neck was well developed, all fingers and toes and bones accounted for. Both technician and doctor assured us that nothing looked out of place or of concern. Here are some shots of our beautiful baby:

baby_11.jpg

baby_19.jpg

So we rest easy tonight, more excited than ever about our baby.

Sweet dreams little darling

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9 thoughts on “The Phone Call, The Day, and The Doctor’s Office

  1. Aunt Kim says:

    Oh Annie, tears are streaming but I’m so thankful you got assurance that all is well. The medical world is wonderful but it isn’t perfect. I’m so sorry you had to go through those hours of uncertainty . It is hard enough during a pregnancy because you worry about things but to have the doctor tell you there is a possible problem really gives you a scare. I was so glad I could reassure your Dad and that he could communicate to you guys that there are false positives to that test. God is good, he’s got wonderful plans for you, JD and Meatloaf, plans for good to give you a future and a hope. So, grow strong and healthy little Meatloaf, we can hardly wait to hold you!!

  2. Barbie says:

    Phone calls like that should not be allowed! Call to schedule an appointment to discuss results, sure, but I just don’t like how they went about it. I can’t imagine the turmoil you were feeling. So scary! My cousin Anna got similar news from her blood test with her second baby (this was after she had miscarried several times and struggled for about 5 years to get pregnant). They too decided against the amnio and she has a very “normal”, healthy little boy- Praise God! (Check out her blog off mine)

    Annie, we’re praying for little meatloaf (with legs and arms) no matter what happens and it sounds like God is already at work with you and JD. What an incredible opportunity to grow closer to eachother and God. .5% is such a small chance…

    Meatloaf is beautiful by the way!

  3. Thank you for sharing this post. Unfortunately, your experience is all too common when it comes to prenatal testing. I’m glad you shared for your readers how a “positive” result actually only means an increase in the likelihood of having a child with Down syndrome, with your odds still being vastly greater of not having a child with Down syndrome.

    Studies have found that getting information from local and national support groups are extremely helpful for expectant moms. I’m not sure if Honolulu is close to you, but hawaiidownsyndrome.com is located there and can offer you better information and support.

    As a father of a beautiful daughter with Down syndrome, regardless of whatever your test results are, you have much joy and love to look forward to. Given your profession, you may also find guidance and comfort in I Cor. 12:12, 17-22 “The body is one and has many members, but all the members, so many though they are, are one body … If all the members were alike, where would the body be? … Even those members of the body which seem less important are in fact indispensable.”

    God bless.

  4. katie says:

    annie… i am excited for you and JD! This baby will be perfect in every way because it will be made by the hands of God in the image of God. I know you will be a fantastic mom and can’t wait to hear more as the story unfolds. praying for the little life inside of you…

  5. Jen says:

    My husband and I only found that our daughter would be born with Down Syndrome one month before she was born. A sonogram technician found her heart defect first. Once that was confirmed, the pediatric cardiologist recommended an amnio to look for DS. We held each other close, prayed, and had a good cry. And through it all, we found that we loved this little girl more than we’d ever imagined–and we hadn’t even held her yet. She is now 5 months old and the light of our lives. Ainsley is beautiful and mels our hearts every time she smiles. You and your husband will be in our thoughts and prayers. We are so thankful for our daugher and the things we’ve learned from our limited exposure to DS and all the blessings it brings. God bless!!

  6. BEAUTIFUL baby pictures!—thumbs up to faith and love and waiting on the Lord. Already your baby is being blessed with tremendous love and prayers. I like how you and JD put everything on its ear when JD said, “And who is to say what is healthy and what isn’t healthy? I just want a baby to love.” And maybe the truth is… You should be so lucky to have a baby with unique abilities. In my book, you passed some hard tests with flying colors. None of us gets through life without some scary challenging tests. Some last a long time, some don’t.

    Hey little one! Enjoy your creation days swimming in God’s love and prayers. We can’t wait to meet you and hold you.

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