Wednesday, October 10, 2012

The First Days: Our Journey Through Anencephaly

How do I even begin? I've always wanted to start a blog, as I'm told I'm a great writer. However, it is usually funny, uplifting pieces that I write. This blog will, unfortunately, not be in that spirit most days. They may be times of laughter and happiness, but there will certainly be grief and sadness. What I hope for most by creating this blog is one thing: peace. We all have our outlets. Some of us cry, scream, drink to numb pain. Some of us isolate. Some of us reach out. I'm trying a new outlet, which is journaling and sharing my thoughts and fears and feelings with the people I love and who love me, Will, our families and our baby daughter Leila Grace Chapman.

Our journey started twenty weeks ago, when we first found out we were expecting. We were thrilled, and terrified at the same time. FIVE children!? We will be completely outnumbered! We will lose every battle, not to mention ever dollar we make which will go towards diapers, food, clothes, sports, education... yikes! But we would make it work. In the months following our announcement, we had a whirlwind of feelings. We fought, we loved, we wavered, we planned, we almost broke. Three weeks ago, our dear friend gave me a wonderful birthday gift: an elective ultrasound to determine the gender of our sweet little baby! We were absolutely on cloud nine when we discovered she was a girl. We have four boys, collaboratively, and a little girl would complete our family. The next three weeks were spent buying bits of clothes and accessories, mostly in the spirit of our favorite sports team, the University of Oregon Ducks. We began to plan a baby shower, thought of names (well, argued about names... you know us), talked about how she would never date because she'd had four big brothers fending off the boys. She would be our princess. Two days ago, on October 8th, we discovered she would also be our angel.

Monday morning, we woke up early to attend our twenty week ultrasound. The tech measured her perfect little legs, her perfect little arms and belly, and we saw her kicking her big feet (which she obviously inherited from her Mama). Toward the end, she measured her head, but stated that she was unable to get a good measurement because of the position she was in. The ultrasound lasted an hour and fifteen minutes. We waiting for my doctor to come in and give us all the results we were expecting: your baby is perfect, everything is on track, and you're halfway there! Forty minutes went by in that waiting room. Forty minutes was very uncharacteristic of my doctor, who was normally quite prompt. When she finally knocked on the door, the look on her face told me something wasn't quite right. She sat down and looked at us and what came out of her mouth next shattered our world. "I have some horrible news to give you that I've only had to deliver to one other family in all my years of practice. Your baby has a neural tube defect called Anencephaly that is not going to allow her to live". Will immediately stood up and wrapped his arms around me as I cried and cried. This was unreal. I didn't want to believe it. I asked if she was sure. I asked if it was something I did wrong. She assured me that this defect simply just occurs and not for any reason. It happens very early on in gestation (26-28 days), and nothing I could have done would have avoided it. My heart was in pieces. With no strength to ask any more questions, she showed us out the back way and sent us home to process. She told me she would call later that afternoon and we could continue to talk.

The drive home was agonizing. Never in a million years did we expect to hear something like this. Until that morning, we planned to bring a beautiful little girl home with us in February. I climbed into bed and continued to cry as Will held me, and we stayed that way for a few hours. Being the information girl that I am, I had to Google this condition and learn as much as I could about it in order to understand. A few things I learned are these (for those curious about what we will be facing):
  • Anencephaly has a .001% chance of occurrence, or 1 in 10,000 babies.
  • Stress, smoking, food choices, trauma like a fall or car accident, are absolutely not connected to this abnormality. It just happens with no real rhyme or reason.
  • At 26-28 days gestation, the the neural tube of a normally developing fetus will close and allow the brain and skull to form. In an anencephalic baby, this tube never closes. A brain stem develops, which allows for reflexes and movement, but the frontal lobe of the brain, which controls thoughts, feelings and actually brain activity fails to form.
  • Aside from the brain, the bodies of anencephalic babies are perfect. Ten fingers, ten toes, beautiful and strong beating hearts.
  • There is virtually no chance of survival after birth. At a maximum, an anencephalic baby will live for a day or two, but most are born still or will live for just a few minutes to hours.
As word began to spread about diagnosis, and as friends began to reach out with thoughts, prayers, well wishes and offerings of support and assistance, we realized just how much love is around us and our baby girl. The last two days have been very much a blur for both Will and I. We have held each other and cried, we have left the house briefly but mostly stayed in bed. Yesterday, we met with Will's pastor and long time friend Alex. We prayed, we yelled at God, we discussed arrangements for a service to celebrate Leila's life. It was a very helpful meeting, and we will continue to utilize Pastor Alex's wisdom and guidance through this journey.

We will spend the coming weeks deciding the best time to bring our little girl into the world, hold her as long as we can, and make sure she is placed in the arms of God with as much love in her little heart as possible.  I've found many blogs by parents of Anen Babies, and they have been comforting to me. I hope as my story continues to develop, I can be an advocate for parents down the road who will be faced with this heart wrenching and life changing obstacle. Please feel free to follow our journey here as we walk down this road. I will update this blog with my feelings, new information, and try to answer any questions people who come across it may have.

We want to thank everyone for their love during this time. We will surely need it, and graciously accept it. Please hold us and our precious baby in your thoughts and prayers.

With love,
Emilee and Will

24 comments:

  1. Of course not. I would love to reach as many people as possible. If it means more prayers, and potentially help for others going through this, by all means, please share.

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  2. What you wrote here is amazing Emilee, and i am so sorry that you have to go through this. I cant even begin to think how this feels but you are such a strong lady, i know you will make all the right decisions and overcome this situation. I wish you the best of luck and i am definitely gonna keep myself updated so i can give you all the support i can! Im here if you ever wanna talk, or need a sitter for Dallas. Love ya girl!!

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  3. Your blog was shared with me and I just wanted you to know that my prayers are with you. I was with my friend about 10 years ago when she gave birth to her daughter who also had anencephaly. She was such a beautiful baby and we are all grateful for the time we had with her. I will continue to pray for Leila and your entire family. God bless!

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    1. Thank you for your prayers, Emily, and for seeing the beauty in these sweet babies. <3

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  4. I am so sorry for what you are going through. My thoughts and prayers are with your family at this difficult time.

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    1. Thank you Eileen! Prayers are graciously welcomed <3

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  5. So sorry to hear and our thoughts are with you. We lost our first at 12 weeks, so I have a little idea of what you're going through. Thank you for sharing your story, and I hope it has helped you. Huge hugs.

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    1. Thank you for sharing, Anna. Yes, writing helps immensely, as does hearing the experience of other mothers that have experienced a loss. Thank you for your support <3

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  6. Sorry to hear what you are going through. I will be saying many prayers for your family and your sweet baby girl. *Hugs*

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    1. Thank you for hugs and prayers! We need as many as we can getThank you for hugs and prayers! We need as many as we can get <3

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  7. Hugs and prayers for your sweet little princess...

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    1. Thank you so much for the support and love <3

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  8. We just received the exact same news on Tuesday October 9th. I've been thinking of starting a blog also, not only to help me cope, but also to share with family and friends what we're going through without having to repeat myself so many times. Our thoughts and prayers are with you and your family.

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  9. Oh sweet Emilee my heart breaks deeply with you as I read this. Your blog was shared with me through a friend and I had to be sure to comment and let you know how much you are cared about and will be prayed for by someone who has been there. Our sweet boy Ryan James was diagnosed with a fatal condition at our 20wk u/s as well and after 15 weeks carrying him we said our goodbyes on August 7 2010. I had no clue how I would survive this but God continually provided more joy and peace than i could muster up in a lifetime on my own and it truly ended up being one of the sweetest times in my life because God showed up when I was at my lowest. May I suggest the book I will carry you by Angie Smith..its a beautiful story of a family very similar to your situation. Please know that you and your family and your sweet leila are in my daily prayers and please feel free to email me anytime should you feel the need to pour out your heart to an understanding soul who has been there..its a hard road but easier with love and support around you...I promise to just listen and cry with you:) kanga4200@yahoo.com. Many blessings..KimmyA

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    1. Dear Kimmy: Somehow I just now came across your comment. Not sure how I missed it initially, but wanted to thank for for sharing your courageous story with me and all the other readers. Bless you and baby Ryan, and thank you so much for your support. I'm so thankful for the friends this blog has brought me, and you've become one <3

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  10. Hi, I dont know you....but I saw a post about your daughter on,a friends page and had to read on about your tough journey. I had a very similar experience, and though its a tough decision...carryig, laboring, and delivering my baby was the closure I needed. Your in my prayers, and this will get easier....i can at least promise you that:)

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    1. Thank you Kelly, for reading and sharing! Yes, the road ahead will be a very difficult but beautiful one, and I hope for peace at the end. <3

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  11. I read your blog from a friend and just wanted to say that your strength, spirit and constant faithfulness to God is absolutely commendable. My thoughts and prayers go out to your family during this journey. Praise God for you.

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    1. It really means so much to me when folks I don't know in person come here to offer their love and support. Thank you so much for the kind words, and please continue to follow. We love all of Leila's cheerleaders, near and far! <3

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  12. I found your blog thru facebook. What you and you're family are facing is absolutely devastating and my heart breaks for you. I'll be praying for you all. May God give you strength, peace and the warmth and comfort of his loving embrace. I can't imagine what His plan is in this, but I know he has a purpose for asking you to walk thru this. I've never personally experienced anything like this, but as a mother I can only begin to imagine the agony and the emotional rollercoaster this must be. You are definitely an amazingly strong woman, and baby Leila is lucky to have such a loving mother. Sending all my love!!! xo
    <3

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  13. My name is Devin Chapman, leila grace was my little sister. I always keep a little piece of her with me at AlL times(a necklace with her Ashes in it) i just wanted to personally thank you all for your thoughts and prayers. My sister lived for about 1-2 minutes and i wish i would have had the strength to have been there and i will regret that the rest of my life. I just want everyone to know your support and prayers are greatly appreciated. Sadly god also took another life this year as well. On new years day january first 2013 emily (leilas mama) commited scuicide. It devastated every person who knew her. All of you out there who prayed and supported her i want to thank you all so much for supporting her

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  14. Hello there came across your blog searching for some support for my sister who just found out that her baby has the same diagnosis. Do you have any recommendations for support groups online or other avenues that helped you heal and cope through the process?

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