Be still and know…

Tuesday, April 9th I went in for my anatomy ultrasound at 17 weeks 5 days. This ultrasound is the “big” ultrasound to look at organ development and gender. I am going to try to summarize the ultrasound findings and then I’ll include the ultrasound report from the doctor toward the end of the post.

To summarize the last ultrasound I posted on the blog, we saw severe scoliosis (curved spine to a 90 degree angle), abdominal contents outside of the body through a large defect in the abdominal wall and abnormal placement of the heart outside of the chest-possibly in the abdomen. All of these findings are pretty much the same at this recent ultrasound. The baby was in a very difficult position to assess for some of the anatomy because of the curvature of the spine and the fact the baby was lying with the heart facing toward my back. The spine remains incredibly curved toward the right side of the body, however there doesn’t appear to be a defect like in spina bifida. The abdominal contents (stomach, intestines, liver, spleen) remain outside of the body through a very large defect in the abdominal wall encased in a membrane. We found one kidney inside the body and one kidney possibly outside of the body through the defect. There appears to be one functioning kidney as there is ample amniotic fluid and a normal bladder. The heart structure was difficult to assess, however there appear to be 4 normal, symmetric chambers. The heart is also partially outside of the baby because there is a defect in the chest wall. That was a new finding today. Another new finding is the fact the baby is basically tethered to the placenta due to the short umbilical cord. This leads the doctor to believe the baby has some form of short umbilical cord syndrome. There will be no definitive answer to what the baby has because the baby doesn’t fit any mold as far as diagnosis go. The doctor said she is more concerned with what she sees on the ultrasound than she is with a correct diagnosis. She said what she saw Tuesday is more concerning than the last ultrasound.

The good news is that we can see some lung tissue, the heartbeat is strong, there is ample fluid surrounding the baby and the brain, face, legs and arms appear normal. The bad news is due to the amount of organs outside of the body and the lack of organs inside the body, this will probably not be compatible with life outside of my womb.

When we talked with Dr. Boyd, she explained to us that we would still have the opportunity to discuss birthing outcomes with pediatric surgeons. I was relieved to know that it won’t be Josh and I making the call of resuscitation or surgeries. We would tell the surgeons in advance that we would like them to continue resuscitation or surgeries as long as it will prolong life and not cause pain or extend death. I wouldn’t know where to draw the line of continuing treatment or saying enough is enough. How can you do that as a parent? Thankfully, Dr Boyd told us the baby and the pediatric team will make that call. There is still a very high risk of stillbirth or demise in utero. Either way, we chose to have a C section to help sustain any life we can for her and so that we could hold her with or without a heartbeat. This is verbatim from the ultrasound report if anything I said above isn’t clear:

Again noted is a large complex ventral wall defect. Fetal intestines, liver, stomach, and a portion of the cardiac apex are contained within this defect, and are seen free floating in echogenic fluid in a membrane enclosed sac. One kidney is visualized within the fetus; the other appears to be exteriorized. No pelvicaliectasis is seen. Bladder is located within the fetal pelvis. A paucity of cord loops is noted within the amniotic fluid, and with color Doppler evaluation, a very short umbilical cord is seen extending from the placenta to the area of the ventral wall defect contents. The fetus appears tethered near the placenta, and does not move freely about the amniotic cavity.

Angulation of the fetal spine is again seen, with approximately 90 degree curvature in the area of the distal thoracic region. Although marked scoliosis makes assessment of the vertebrae more difficult, there is no overt sign of an open neural tube defect or sacral agenesis/dysgenesis.

Assessment of umbilical artery number is limited by fetal position and short cord.

Evaluation of the heart is limited by fetal position and partial exteriorization of the heart. 4 chamber view appears symmetric. Outflow tracts could not be adequately assessed.

Genitalia appear most likely female.

Fetal extremities appear unremarkable, including foot position. Visualized intracranial anatomy appears normal.

Findings were discussed. Large membrane enclosed ventral wall defect with partial ectopia cordis can be associated with pentalogy of Cantrell as well as with conditions such as body stalk anomaly/limb body wall complex. The short umbilical cord and presence of severe kyphoscoliosis are more consistent with limb body wall complex. The lack of apparent limb/cranial/face involvement is less consistent with limb body wall complex. We discussed that if this does represent pentalogy of Cantrell, it is at the very severe end of the spectrum. Given the very large size of the ventral wall defect, presence of markedly short umbilical cord along with presumed diaphragmatic defect (based on finding of ectopia cordis) and severe kyphoscoliosis, appearance is most consistent with lethality. We discussed increased risk for intrauterine demise, but also discussed that the fetus may remain viable in utero, in which case Ms. Shrader and her husband would like to have a pediatric team available to assess the neonate and to determine whether rescucitation efforts would be possible. Ms Shrader confirmed again today that she would not want to intervene with termination of pregnancy even for a lethal fetal condition.

If you caught it in the last paragraph I typed, good eye. We found out Tuesday baby Shrader is a girl.

We decided to name her Cora Kimberly. Kimberly is my mom’s name and it was an automatic as soon as we found out the gender. One of my mom’s dying wishes was to be a grandmother and I want to honor her. Cora is just a vintage name we could both agree on.

Here are some pictures I grabbed myself the day after our big ultrasound. From here on out I will post ultrasound pictures that show Cora’s beauty and not necessary point out what’s “wrong” with her. I tried to avoid pictures where you can see the organs and such outside of the body and focus more on her face and limbs. You can still see in some of the pictures, the extreme curvature of the spine forcing the legs to point off to the right side of the body:

SHRADER_9

SHRADER_8

SHRADER_6

SHRADER_4

SHRADER_2

SHRADER_10

As you can probably tell, this is not the news we hoped and prayed for. That is ok, because God is greater than I am. We have resigned to celebrate Cora as long as her heart is beating and grieve after it’s not. This news hit me a little harder than the last ultrasound because the prognosis is much more grim. We don’t have a lot of hope in the medical diagnosis but I am still aware God can perform miracles, so we’re praying for those. I am currently reading through the book of Job to remind myself that God is sovereign and I may never get a satisfactory answer for Cora’s suffering. Job was considered “blameless” and “upright” but he suffered many calamities losing his children and his livestock. His friends convinced him that his sins caused his pain and punishment by God, when in reality Satan was attacking Job to try to seduce him into denouncing God. God never answers the question in the book of Job about suffering in this world but does reassure us through Job’s story that He is sovereign and we must put trust in that and not in figuring His plan out for us.

“I know that you can do all things;
no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
Surely I spoke of things I did not understand,
things too wonderful for me to know.”

Job 42:2-3

God gives us obstacles and blessings in our path without our knowledge of when, what, how or why. God has shown me before that He certainly works all things for His glory and for our good. I have learned to trust Him through past experiences with grief and I will learn from Cora’s story. Please help us celebrate Cora’s life now and grieve with us if she passes later.

In Him,

The Shraders

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27 thoughts on “Be still and know…

  1. Praying for your family. You may find some comfort reading angiesmithonline.com. Look for the story on Audrey, their precious angel. The blog posts are from years ago but her faith amazes me still today.

  2. Cora’s pictures are sweet. Mr jesus makes no mistakes and has placed her in the perfect family. Thank you for sharing the scriptures you are reading, and continuing to share your faith during your own trials. I am praying for your miracle.

  3. Thank you so much for sharing with us. Your testimony is so special and it blesses my heart to read it. I am praying for you, Josh, and Cora. Love you all!

  4. You don’t know me, but Cora’s story was so touching and glorifying to God. What a beautiful little girl you have.I will be praying for the three of you as you live these next months out.I pray for God to bring His healing hand into this situation..and touch Cora in a mighty way..to God be the glory!

  5. A sweet little baby knitted together by God to fulfill His big purpose for her life. Just your positive words, and choice of life is already proving Cora’s life to have great and mighty purpose that only God can give. I don’t know you or your family, but I am encouraged to see your God-filled attitude during trying times, and will pray for your family – that includes baby : )

  6. What an amazing book Job is! An account of so many ways that we can rationalize and try to take control of things that are beyond even our grasp and comprehension. It is so wonderful that he is God and we are his followers rather than any other way. I too have gone to Job in times of trial, and I know that through the discernment of His will, directly on your life, and how you interact – even briefly – with others, that healing will come and so much more. Understanding, peace, dependence even… on His power – great enough to save the world, much less our greatest trials. He will never give us more than we can take – and He points us to him all along. Thank you for sharing in this trial, and growing my love towards him to be that much stronger. I know that it must be doing the same for you. Your witness is being felt!

  7. We are friends of Bryan and Katie and I have read your posts as Katie has posted links to them. We are praying for you and are so encouraged by your trusting attitude in God’s goodness and sovereignty. Thank you for sharing something so raw and personal, and I LOVE the pictures of your sweet and beautiful Cora 🙂

  8. She is so beautiful and she does look like she is praying. The name is beautiful. Thank you for sharing. Our prayers are with you all. God Bless You all. Love you all.

  9. Cora Kimberly is already so special! So are you and Josh. She has already made a difference in this world by your testimony and faith. Your mom would be so proud that she has her name! I will lift you all up in my prayers and may God bless you for sharing your story of love and faith! I love you all! – Aunt Sandra

  10. She is so blessed to have you as her mommy! It is a miracle in itself that God made our bodies so perfectly that we can carry little babies inside us and give them the love and strength and comfort from within us. 🙂 those ultrasound pictures brought me to tears bc she’s so perfect and beautiful! Thanks for sharing. You’re testimony is such a blessing to everyone who reads. I will pass it on. Love the name too! God bless!

  11. Keeping you, Josh and, sweet little Cora in prayer. I so appreciate your focus on her beauty. She is so precious tucked in the safety of her mom. Thank you for letting us share your journey.
    Sending hugs and love,
    Mimi

  12. Rebecca, thank you for sharing and allowing us to pray for you and your family. God has a purpose and a plan for you, Josh and baby Cora, that is perfect. Praying HIs perfect peace and love to all of you.
    Wanda

  13. What brave dedicated and loving parents. When some take destroyin a fetus so lightly your devotion is simply amazing.
    Heaven loves you and baby Cora. So many prayers with you.

  14. Rebecca,

    I wrote the paragraph below a few weeks ago, but did not know if I should send it, but I am sending this now, not to cause more pain, but to let you know how deeply you are loved. A mother’s love is not broken by time or space and lives on eternally. May God bless you and Cora Kimberly and hold you close.

    “Last night I had a dream about your Mom. In the dream, she was young and strong; happy at first, but then she started to cry. As I read your words tonight, I could not help but think about Kim and my dream. In the dream, she was clearly overwhelmed with emotion, but not broken. It was a good dream. It was a reminder that we are surrounded always by such a ‘cloud of witnesses’ (Heb 12:1)…those that go before us and those in intercession for us always.”

    Whatever the outcome, know that you are deeply loved.
    Janet Berry

    • I just felt compelled to respond to your comment, Ms Janet. I haven’t had time to respond yet to others but this just touched me so much. You knew mom so well and it makes me feel so comforted that you dreamt that about her. What comfort it is that when/if Cora passes, her grandma/my mom will take her in her arms.

  15. Praying for you and your precious baby. Thank you for the invitation to journey with you in celebrating Cora Kimberly’s life.

  16. I know we don’t know each other, but we have some mutual friends, and I wanted you to know that I’m praying for you and your family. I’m amazed at your faith and the way you and your husband are able to share it in a difficult time. Thank you for your witness.

  17. I was so touched when i read about Cora and i am so thankful that u decided to share her story here.
    My baby is now 12 weeks old and there are so many similarities with your little girl. Our babys heart is outside of the body (ectopia cordis) as well as the liver and parts of the abdomen. The umbilical cord is to short and the placenta way to big. Some of the organs don’t function well. All doctors told us that there is no hope. We decided to keep going, we want to treasure every moment we have and make good memories. Maybe a miracle happens….
    ….but even if not i want to accept our baby as a gift and i want to be thankful for every moment we have together.

    I hope and pray god gives us the strength to do that.

    Thank you again for sharing. I have been searching for someone who also has a baby with ectopia cordis and its so hard to find any information about this condition. It is good to know that there are other babies and parents in a similar challenging situation who decided to carry their baby as long as possible.

    I wish you and your Husband all the best, may you be surrounded by good friends and the holy spirit so you never feel lonely or lost.

    Lots of Love from Germany!
    Doro

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