Our diagnosis

We got the call from the genetic counselor today. Our baby has been diagnosed with Turner syndrome. Which means the baby is missing all or part of (we won’t know until the “full” test is back) a sex chromosome. It also means our baby is a girl.
99% of babies with Turner’s syndrome die before 26 weeks gestation. I am currently 13 1/2 weeks. Of the babies who survive they will be short (like this baby was going to be tall anyway), infertile and are at risk for heart defects and learning disabilities. We will  probably have “viability” scans every few weeks for the remainder of the pregnancy. The chance that this will recur in future pregnancies is less than 1%.
To be honest I am devastated, hurt and angry. I don’t get it and the thought of losing another baby is almost too much for me to bear right now. I don’t know whether to get maternity clothes out or keep them packed away. I don’t want to have to put them back like I did after Knox. I don’t want to wake up every day for the next 13 weeks (until I get to 26) and wonder if my baby is still alive. I don’t want to go through the grief of losing a baby before I get to hold her. I don’t want to have to explain to my children that their baby sister has died. And even if we make it to 26 weeks we aren’t safe. I don’t want to have to preface every sentence about the baby with “If she survives…”. But if she survives, I don’t want to worry about whether she’ll find a husband who is okay with not having children.
I just plain don’t want to walk down this road. I so wanted to hear “everything looks good”. But I didn’t. I don’t know why God is bringing us here. I don’t understand. Like Kerry said “The doctors didn’t give us much hope, so we can only hope in Him.” And it’s true. Talk about being brought to the point where we fully have to rely on God. I have to trust Him for peace, for the life of my unborn child and for what lies ahead. Right now I am thankful that my baby is alive today, I pray she will be alive tomorrow too. I am thankful we have answers. But I am struggling to understand and to process this all. I don’t have anything but tears and raw emotions right now.
Thank you for praying.

1 Peter 5:6-7

6 Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, 7 casting all your anxiety on Him, because He cares for you.

10 thoughts on “Our diagnosis”

  1. Oh Erin! The tears are just flowing for you right now! I am so sorry to here this about your lil princess! Wish I had the words to say but I know there is nothing that can be said to take this hurt away! Just know we are hurting with you and your boys!

  2. Erin and Kerry praying for peace as you go thru this pregnancy but most of all praying for miracles because God does provide them and I believe that this will be your miracle.

  3. God creates us all with a purpose. I wish I could bear this hurt for you. The mom and Grandma in me wants to make this better so very badly! I will continue to pray thats all I know to do, words seem so futile. I love you all.

  4. Erin, I’m sorry for your news today. I’ll be praying for you and your family as you process this news. May the Lord fill you with His grace.

  5. I’m soo sorry Erin, I don’t know y either, only god knows, he has a plan, let’s just keep on praying your baby girl will be ok, miracles do happen. Positive thoughts, I know it’s hard, my son Michael was diagnosed with a kidney disease when he was 15 months old, we had many Dr and hospital visits, that’s what his whole childhood consisted of. He is now 19, and completely disease free for 2 yrs now. and off all medications. I’ll keep praying for you.

  6. Oh my dear Erin and Kerry,
    How my heart GRIEVES and ACHES — just for the uncertainty of what you are walking through right now! I am SO praying for you — that JESUS will be your sweet comfort, peace…and your sufficiency — for today, and the days ahead!!

  7. I am so sorry you are going through this Erin. I know that feeling all too well. I’ll be praying for your family. I believe in miracles, because there is one snuggled up right next to me now! Hold onto hope and keep faith in your heart!

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