A Long Five Days

Its been a long five days.

At Vivian’s 1-week check up last Friday the pediatrician noticed a small patch of what looked like burst blood vessels at the base of her spine. He somewhat matter-of-factly suggested that we take her in for an ultrasound as such a mark can mean a baby has Spina Bifida.

My heart sunk and I’m certain I missed a breath. Vivian’s 20-week ultrasound was clear, and she was born healthy and vibrant.  I just wasn’t prepared to have a conversation about birth defects after her birth.

Spina Bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the United States. Because of the paralysis resulting from the damage to the spinal cord, people born with Spina Bifida may need surgeries and other extensive medical care.  I felt overwhelmed yet emboldened whenever I thought of Vivian facing this diagnosis – I would be here to help her through the journey. I would never turn away.

Everyday as I looked at her precious face and peered into her dark eyes I promised her that I will always protect her.  I will always keep her safe. I will do whatever I can do help her live a happy and fulfilled life.  Regardless of whether or not she has special needs. She is my girl and I am her mother.

Fortunately, the doctor today found her spine to be perfectly normal and healthy.  He said the small mark on her back will likely fade over time, and even if it doesn’t its just a little mark so who cares?! I immediately felt lighter upon hearing the good news – such relief and so much gratitude.

As I left the hospital I said a prayer for families who don’t receive good news.  I pray that they have access to excellent health care. I pray that they are surrounded by loving family and friends who offer support and encouragement.

Once home today I made a donation to the Illinois Spina Bifida Association.  I know its a small gesture, but I wanted to do something for the families I’ve been praying for all afternoon.


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6 Comments for this entry

  1. Courtney says:

    I had something similar happen with Jimmy recently. I, too, told him that no matter what happens on the journey of his life, I will always walk with him and give him all I have. I’m so happy everything turned out okay for little Viv.

  2. Matt Larsen says:

    Thank you for your support of the Spina Bifida Association of Illinois!

    As the leading provider of direct and support services in the Midwest for over forty years, we’ve helped thousands of individuals and families affected by Spina Bifida through camping, weekend retreats, special education planning, information, referrals, and support groups.

  3. Mary says:

    All babies are perfect!

  4. Happy things worked that way. I am sure you would be strong no matter what. Keep in touch.

  5. Thank you for sharing this moving part of your beautiful baby’s beginning. I loved your response to reach out to those families who received a different diagnosis – this inspired me to think about doing the same next time we’re in that boat.

  6. Priya says:

    What a scare. You are very brave to have handled it all so nicely. Very happy for you that everything turned out OK.

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