Anencephaly

Why I Fight So Hard for DeKalb Medical and SeeBaby

~ lovingbrielle ~ Leave a comment

I spent a lot of time at DeKalb Medical while I was pregnant with Brielle and, while I can’t speak for the rest of the hospital, the staff in the Women’s Center were incredible. They were attentive, compassionate, empathetic, knowledgeable, motherly, warm, inviting, I could go on and on. From Jamie and her incredible kindness, to the nurses, to the NICU nurses and Dr. Armand. I just couldn’t say enough about them.

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Sweet Jamie! Let me know if you want me to take any of these down.

Jamie coordinated everything so that our day with Brielle would go as perfectly and seamlessly as possible. She mothered me when there was no one there to mother me. She loved Brielle and treasured her. She guided me through one of the hardest days of my life. I truly believe God sent her into my life and Brielle’s and that the day could not have happened without her. She is, truly, one of DeKalb Medical’s greatest assets.

Dr. Armand learned as much as he could about how he could treat Brielle and keep her brain tissue viable after her birth. He supported me, when even the Children’s Hospital of Atlanta denied Brielle care. He wanted what was best for Brielle and held onto hope for her, hope for a better outcome. He stood by and watched the delivery, ready to care for her if needed. Unfortunately, Brielle’s brain tissue was in very poor shape, she never had a chance. But, Dr. Armand and DeKalb Medical, can help other anencephalics who may have a chance.

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Jamie with little Brielle.

The nurses and staff at DeKalb Medical and Dr. Bootstaylor worked together in perfect harmony. They respected each other and their work was beautiful. That kind of partnership, that kind of heart, is incredibly rare. It is something that should be encouraged and nurtured. And I, as well as many others, felt that it is a partnership worth fighting for.

I hope DeKalb recognizes what a special hospital they have, and I hope they weed out those who wish to do it harm, and lift up those who give wholeheartedly and selflessly.

DeKalb and Dr. Bootstaylor could operate separately and everything would be okay, but, again, this partnership is something special. I hope SeeBaby and the staff of DeKalb Medical know how much I love them all and support them.

I talk about my love of DeKalb here as well.

Posts About The Care We Received From DeKalb 

Part One: The Day Brielle Was Born

Part Two: The Day Brielle Was Born Continued

Part Four: Brielle Meets The Family

Our Last Day In The Hospital

 

Why You Should Care About Dr. Bootstaylor

~ lovingbrielle ~ Leave a comment
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Dr. Bootstaylor encouraging me as I read to Brielle for the last time.

So why does SeeBaby and Dr. Bootstaylor matter to Loving Brielle followers? Why am I so outraged? Why do I care if you care?

You all need to keep in mind that if Dr. Bootstaylor had not been an advocate for Brielle, if he had not been our doctor, that our standard of care would have been:

  • Encouraged fetal termination
  • Potential to be dropped as a patient and denied OB care because Brielle had anencephaly
  • Denied routine maternal care
    • My polyhydramnios would not have been monitored closely and safely.
    • Basic, routine, care would have been denied or discouraged.
  • Denied birth plan of my choice
    • This would have meant I could not have a family centered cesarean.
      • I would have never held Brielle alive, she would have been taken from me.
      • David would not have been allowed to video her birth.
    • I would not have been allowed to carry her as long as I did.
    • I would not have been allowed a bereavement doula (Lauren Bishop).
  • Brielle would have been denied standard fetal care because she “would die anyways” and take time away from healthy babies.
    • We would have never been allowed to meet with Dr. Armand (DeKalb neonatologist) or Jamie Ray. We were connected to Jamie by Dr. B and his practice, SeeBaby. And Jamie coordinated everything on the DeKalb Medical side. Jamie made sure everything was perfect for Brielle and I.
      • Jamie loved on Brielle as if she were part of her own family.  I love this picture of them.

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    • We would have never had routine or specialized ultrasounds.
      • We would have never had 3D ultrasounds of Brielle or watch her play in my tummy.
    • We would have never had a consult with neurosurgeons.
    • We would have never been allowed to believe Brielle had feelings and emotions of her own, likes and dislikes. In fact, we were laughed at by other practices.

And that’s just an overview of some of the ways Dr. Bootstaylor and SeeBaby took care of Brielle.

Sure, we can make this political, we can make this a woman’s rights issue (and it is), but that may make you uncomfortable. You may prefer to just stay out of it.

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But what about Brielle? Will you care because of her? Will you help me fight for her legacy? Dr. Bootstaylor is a part of that. If it weren’t for him, none of you would know me or Brielle.

You don’t have to physically be in Atlanta to make a difference. Just talk about it. Share your outrage that this man has become a target, merely because he is a good man. Draw attention to the injustice circling Dr. B.

Dr. Bootstaylor wanted to help Brielle, he cared about her. Maybe that’s taken for granted, but for me? Brielle had a short amount of time here. And everyone who stood in her court and defended her, those people are precious to me. I will fight hard for those people. They loved my daughter. They valued her.

And all we, all I, have left is her memory and legacy. I’m not going to just throw that away, or turn a blind eye to another’s suffering, because it might make me or others uncomfortable.

It’s fundamentally wrong, no matter your personal or political beliefs, to let a good man be shot down and discouraged because he stood up for pregnancies like mine. Because he made other doctors jealous and uncomfortable.

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What kind of people are we if we let this happen?

I can’t make any of you care, but I’m begging you to. I am begging you to recognize all of the good this man did for our sweet Brielle. I am begging you to help me stand up for him. Please, for a few days, just unite and join me in defending a man who gave Brielle her best chance.

Just Some of the Stories About Dr. Bootstaylor:

Introducing Dr. Bootstaylor

Family Centered Cesarean 

Brielle Has a Membrane!

What Happened In The Hospital (my hospitalization due to polyhydramnios)

Brielle’s Last Ultrasound

Part Two: Brielle’s Birthday Continued

Part Three: The Delivery

 

Too Perfect

~ lovingbrielle ~ Leave a comment

There is nothing more beautiful and perfect than an anencephalic baby. It breaks my heart that the majority of these babies are thrown away. Look at how beautiful they are. They’re so sweet and innocent.

I cried and cried over this picture last night because, it hurts so much to know that people can’t see how perfectly beautiful each and every baby is. These little babies just want to be loved. And in turn, they have so much to offer.

David said to me last night, “Brielle was just too perfect. She was too sweet, too loving, too smart. The world wasn’t ready for someone so wonderful, so she had to go back.”

That’s how I like to think of all anencephalic babies, as well as infant loss in general. They’re just too beautiful, inside and out. They’re too perfect.

https://www.gofundme.com/2euxsuus

A Mother’s Love

~ lovingbrielle ~ Leave a comment
When we first received Brielle’s diagnosis and I began to look at images of anencephalic babies, I was scared. Babies with anencephaly are portrayed as monsters or frog like. They are displayed in graphic clinical settings. A google search of an anencephalic baby will leave you disgusted and horrified. And I was scared that maybe I wouldn’t love Brielle or I’d think she was ugly. Will anyone love my baby? The whole situation was terrifying and I had no idea what I was getting myself into.
 
I am a part of an anencephaly support group, I have been since Brielle was diagnosed. And fellow mothers share images of their sweet anen babies. In some of the pictures, the baby has passed and is lovingly cuddled or swaddled in special things just for that baby. Some pictures the baby is smiling, giggling, blowing bubbles, they’re happy, loved. It’s beautiful.
 
I find myself completely heartbroken and in love with everyone of these babies. They’re so perfect and these babies are so loved. Each one, has a story like Brielle’s, a story of love and hope, and trust in God. Each is special. They each had their own personalities, likes and dislikes. A lot of them were active and silly. Each one deserved a future.
 
And so it’s heartbreaking, because I know the pain the parents feel. I know how it hurts to guide your child into death. And it’s heartbreaking, because each baby I see reminds me that another will come and another will die. Each baby I see reminds me of the horrors I saw in the medical community regarding anencephaly. Each baby reminds me of the ignorance of our society, how cruel people can be towards these sweet innocent babies. And it shouldn’t be that way.
 
I can’t imagine a more purely beautiful baby. I need to make a difference for these babies, they deserve it. Brielle had a beautiful birth and loving support from See Baby and Dekalb Medical. The care and love we received is incredibly rare and it should be standard. These babies deserve to be valued and respected. They deserve to be loved by everyone, not just their parents.
 
I know now that I had nothing to worry about. I still can’t get over how perfect and beautiful Brielle was and is. I am so proud of her and I just want to show everyone how cute she was. Brielle, David, and I were blessed with incredible amounts of love and kindness. We’ve been (happily) overwhelmed and I am so grateful. I don’t know how yet, but I will find a way to share Brielle’s story and the love that you all shared with us. Brielle’s life is a story of hope and love, even in the darkest times, and it’s proof of how amazing anencephalic babies are and everyone needs to know how special they are.
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