Savannah Hope’s Journey

theres-always-hope

PHOTO CREDIT: BANKSY’S ICONIC ‘GIRL WITH THE RED BALLOON’ 

 

Savannah Hope’s Journey

‘Savannah Hope’ has been diagnosed with Congenital Diaphragmatic Hernia, (CDH). CDH is a birth defect of the diaphragm. Essentially with CDH there is a hole in the diaphragm that allows organs from the diaphragm to move into the chest and thereby compromising critical lung development.  CDH affects about one in every 2,500 live births per year.  CDH is a life-threatening pathology in infants, and a major cause of death from pulmonary hypoplasia and pulmonary hypertension.  She was diagnosed at 19 weeks during a routine ultrasound and genetics counseling session for down syndrome.

The severity of CDH is largely determined by the position of the liver and LHR, lung-to-head ratio.  Baby Savannah has severe left CDH with a LHR reading below 1.0 and ‘liver-up;’ meaning her liver and contents of her abdomen are in her chest.

We will be sharing our journey through diagnosis, surgeries, delivery, and Savannah’s battle to survive after birth.

During the next 6 weeks we’ll be in the hands of several incredible doctors, angles as I like to call them, at the University of California, San Francisco Fetal Treatment Center. We will undergo in utero surgery called tracheal occlusion to help improve her lung development.  We feel this is her best chance at life.

According to doctors, she has a 30% chance of survival.  But, they could be wrong, right?! Miracles do happen everyday.  Our baby girl has a long and hard road ahead of her.  She has touched our lives and many others in incredible ways.  No matter how long we have with her here, she is celebrated and loved.

We humbly ask for your prayers and positive thoughts. We’ve also created a Prayers For Savannah Hope Facebook Page to celebrate her through encouraging words, inspirational photos, and prayer.  Please share your experiences as well.  It’s wonderful to connect with others that have experienced hardship. Thank you for reading and joining us through our incredible journey. 

blue ribbon Savannah CDH

Our Journey

‘Your Baby May Not Survive!’: A Routine Ultrasound Turns Life Threatening  (March 15)

UCSF Fetal Treatment Diagnosis: Are We A Candidate for Tracheal Occlusion?  (March 17)

Tracheal Occlusion Surgery: Inserting The Balloon  (March 20)

One Small Miracle Followed by One Big Question Mark  (April 3)

A Mother’s Letter  (June 6)

Later Submissions Based On Progress (updating soon)

Delivery: Her First Breath

CDH Surgery After Birth: Closing The Hole

ECMO: Will She Need It?

Our Newest Addition Comes Home: Surviving The NICU

Savannah Hope Fundraiser Button

My dearest friend Maytrella and her beautiful family have set up a Prayers for Savannah Hope Fundraiser.  Words cannot express how humbled and grateful we are for your prayers and support. God bless!

CDH References:

Congenital Diaphragmatic Hernia, Wikipedia

UCSF Fetal Treatment Center

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16 thoughts on “Savannah Hope’s Journey

  1. Melissa says:

    Just reading this now Heather – I don’t even know what to say mama. I’m so sorry this is happening to you & your lovely family, but I’m grateful your journey with Savannah has given you such a greater appreciation for life. Thinking of you. Praying for you. Sending many loving warm thoughts your way for sweet little Savannah ❤ xx M

    Like

    • crayonboxchronicles says:

      Hi Katie. Congratulations! Baby #3, that’s so beautiful. I never thought we’d be in this position, but she is our little angle and no matter how long we have with her, she has bettered our lives. Trying to stay strong for her and my family. Thank you for reading and keeping us in your thoughts. Are you having a boy or girl? ❤

      Like

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