September 6, 2016

Miscarriage After a Down Syndrome Pregnancy

miscarriage after a down syndrome pregnancy ultrasound picture no heart beat 8 weeks 6 weeks

A friend reminded me recently that the broken hearted are not immune to getting their hearts broken again.

Exactly two years after our son Anderson’s prenatal diagnosis of Down syndrome and a congenital heart defect, there we were again, another ultrasound, another round of heartache. Only this time, no heart beat.

We found out we were pregnant for the third time just days before my husband’s brother got married. I desperately wanted the pregnancy test to turn pink. This was the last month where we could have a baby before our next move and before Andy gets into the thick of his orthodontic residency. I waited for Andy to arrive in Georgia to take the test, too nervous to find out the answer on my own. 

We waited for a few seconds and there it was, a second pink line. Andy said, “We’re going to be outnumbered,” with a huge happy grin on his face. Those blissfully unaware one-liners cut deep when life begins to unravel.

When we returned home, panic started setting in. I thought it was because Anderson was being particularly difficult with his therapy exercises. When we walked into his clinic tears filled my eyes and I couldn’t stop the flood. I excused myself from his therapists, went into the bathroom and cried out, “God, don’t do this to me again, don’t do this to me again, don’t do this to me again.”

I was worried about receiving some sort of bad news with this pregnancy. I wasn’t sure what at the time. It turns out, that the baby inside of me had stopped growing a day or two before. I guess I knew. I knew something was off. That this pregnancy that Andy and I prayed for, for months, for years, would end right after it began.

My body was not getting the message that the life inside of me was now lifeless. The day we went in for the operation was one of the loneliest days of my life. No amount of soothing music and serene images dancing across the big screen in the pre-op room could bring calm.

Part of me feels sorry for us. We cried out for just an uneventful pregnancy. Don’t we deserve that after what we went through last time? And then part of me feels ridiculous for even writing about this topic at all, as 10-25% of all pregnancies end in miscarriage.

And really, both thoughts are absurd. Children are a gift, not a right. And if we feel as if we can’t talk about our pain because so many others experience far greater pain, well then, we would all hurt silently. The truth is, we are all subjected to and connected by the joys and sorrows of the human experience.

Everyone can relate to a broken heart, even if the degrees vary.

So, here I am with a heart that is once again wrecked, a soul that is restless and this time with a body that feels empty. How do we keep doing this? How do we keep trying in a world with no guarantees that unexpected pain won’t once again rip through our home?

We remember that a life lived in the shadows of comfort is no life at all. Fear will not rule our hearts, love will. So, we will stand with our faces in the sun, not knowing what will come next, but with a hope that is unrelenting.

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41 thoughts on “Miscarriage After a Down Syndrome Pregnancy”

  1. So very sorry for your loss and may God bless your family. Tears are because you cared and are not to be denied. Betty Seefeld ,PT

  2. So many of these words speak to my heart. Thanks for this post and for being brave. So sorry for your loss – hate that you had to go through that. Super difficult and no words will really help. I know you know God is good and I know you look forward to the day you can meet that little one in Heaven ❤️ XOXO

  3. Miscarriage is one of the worst feelings in the world. I think the loss, devastation and disappointment are crippling.

  4. I totally understand your grief. I had a miscarriage on my first pregnancy. My second went in for ultrasound no heartbeat. To make it worse I could feel the pressure of the DNC and the staff talking while performing. Apparently I was not totally out. My third no heartbeat and another DNC this time fetus tested to have been diagnosed with Turner Syndrome. Not sure if I would ever have a child. After my doctor did exploratory surgery he noted I had a septate uterus. Got pregnant shortly after and have two amazing boys. Prayers for you!

  5. Thank you for sharing! I’m so sorry for your loss and I will be praying for you. So often, Christians do not talk about miscarriages, but if we are truly pro-life, we should mourn every life, even miscarriages. I’m truly sorry for your loss. Praying that God will hold you during this time and that one day you may meet your son or daughter in heaven.

  6. I’m so sorry. :( And it is okay to grieve. I have always found it a great comfort to remember that our lost babies are in fact, not lost at all, but safe with our Heavenly Father. One day we will meet them, and it will be a sweet reunion. Until then the pain ebbs and flows, returning at unexpected moments and making Heaven something I long for more than I ever did before my first miscarriage.

  7. Jillian,
    I feel like we are leading parallel lives. I have an almost-three-year-old son, Grant, with Down syndrome, and we received his diagnosis at birth. It was a shocking, grief-filled experience, but now I can’t imagine my life without him. Like Anderson, Grant is full of joy and hope and light. After lots of prayer and discussion, we decided to try for a third child. To our delight, we found out we were expecting, but I didn’t want to tell anyone until we heard the heartbeat. I just needed to hear the heartbeat and know that everything was okay. At ten weeks along, we went in for our first appointment…and they couldn’t find a heartbeat. The baby had apparently stopped growing at 9 weeks and 5 days. I had prepared myself for hard news, but for some reason hadn’t even considered our story would also include miscarriage.

    I know this time is dark…I am sending you a little candle of light as a reminder that there is still light in the darkness. When I came home from the hospital, all I wanted to do was hug Grant and his older brother. They continue to show me the way.

  8. I also was expecting a perfect delivery but God had a new direction for my life. My daughter had a stroke at birth which resulted in her having cerebral palsy, profoundly deaf and nonambulatory. It was amazing how many lives she changed without uttering a word. I realized God truly blessed me not burdened me for the next 24 years that I had my precious Shannon.

  9. My heart goes out to you, your husband, and your babies. We have two living children ages 16 and 2. We lost two babies in between our living children and we’ve lost three since our 2 year old. The three we lost since our 2 year old were all within nine months of each other. Two of our losses were missed miscarriages in which I had to have a D&C for both. I am praying for all of you and you’re all in my heart.

  10. My son and daughter-in-law had the same experience with her second pregnancy. They too where heart broken. I know there are no words to ease this pain. After waiting the doctor’s recommended amount of time, they conceived a beautiful baby girl. Thinking of you in this time of sorrow.

  11. So very sorry for you and your sweet family. Praying that God gives you strength for each coming day.

  12. From one mother who has lost to another, there are no words to describe how much I ache for you and your husband. You are in my thoughts.
    It may feel like you’re alone, but you are not. So many of us have walked this path…you’re not alone.

  13. There is so much I want to share with you to try to encourage you and bring a sense of comfort to you. Truth is, the peace you need only comes from The Lord. Encouraging words of love help, but when we hurt so deeply that we are numb, sometimes the best of one’s intentions will not touch the surface of what we need. There is also the battle between our flesh and spirit… We have natural emotions and desires, then feel guilty because we know there are others that have been through worse. Remember that we are not in competition with one another and our hurt is just as important to God as our fellow brother or sisters. This life is not easy! Thankfully these “seasons of life” don’t last forever… Good and bad ones. We trust God uses these seasons to mold us. It sure doesn’t feel good at times, though! I love to journal and write as well and it seems to be therapy. Just writing about your journey will help your healing, I’m sure. Connecting with precious ladies that have been in your shoes seems to help give us comfort, too. They are a Jesus we can see, touch, and feel so to speak. You and a few other ladies in social media are helping me as I am beginning this journey with DS. Although there is no “magic” words to give to you to make this pain disappear, I can pray on your behalf to The One who can heal and give you the peace that passes our understanding! Love, love, love to you sweet sister! ❤️

  14. Jillian & Andy, I am so very sorry for this loss of a life! Please know that Dr Hanes & I are both keeping you in our prayers! I know that there is nothing that we can do to lessen your pain. But we can ask God to find a way to lessen your pain!!

  15. Jillian and Andy,
    very sorry for your loss of a precious one.
    It is painful, we know too. We had 3 miscarriages…but are blessed by our
    children, and they are all the more precious. Life is a journey, we know you will
    find the joy of future children, and your family will thrive!
    Many blessings to each of you.

  16. Jillian, I am so sorry for your loss. I also suffered a miscarriage at 10 weeks after my first two uneventful pregnancies. I remember all too well the sadness, the anger and most of all, the guilt. I wondered if I did something wrong. Did I eat something that I shouldn’t have? Did I have a glass of wine while pregnant and didn’t know it? Was it because I carried in too many bags of groceries at one time? Even after my OB assured me that it was nothing I did, nor was there anything I could have done to save my pregnancy. She explained to me that, somehow, a woman’s body “knows” a normal pregnancy and reacts appropriately and that a miscarriage results from either a severe defect w/the pregnancy or something called a blighted ovum or any of a number of other “issues” that would be incompatible w/life and therefore, our bodies “reject” the pregnancy. All of which, logically, made sense, but it still took time for my heart to accept that explaination and for my guilt to subside. You need to allow yourself to grieve in whatever way is best for you. It will take time. But you will smile again. And feel joy again. And you will get pregnant – it may happen rather quickly, much to your surprise. It happened to me. Within 6 months of my miscarriage, not only was I pregnant, but I was pregnant w/twins! And yes, the first 12 weeks were the longest, most anxiety filled weeks of my life, but they do pass. I’ve since learned that these little blessings are called Rainbow babies, the babies after a miscarriage. My prayer for you is one of acceptance, healing, hope and Rainbows.

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