A Letter to My 1-Year-Old Son, Who Had an Encephalocele

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To My Dearest Miracle, Zak:

December 29, 2017 we will celebrate your first birthday. The past year has been a tumultuous journey—one I can hardly explain in words.

DIAGNOSED WITH AN ENCEPHALOCELE IN SECOND TRIMESTER

From the fifth month of pregnancy, I learned of your encephalocele and the choices I needed to make for both of us. In shock, I stared at the fetal MRI and ultrasounds because they were not consistent with the vibrancy I felt with every twist, turn, punch and jab. I knew then you were and still are a fighter. 

For five months, I cried, became angered, fearful and resentful of God. Why would he bring you into my life, at the age of 45? Only to become a statistical probability of surviving 1 in 5,000 live births? I was confused. As a nurse, I had medicine to believe in. But as a mom, I chose to surrender to my faith.

WHAT FOLLOWED AFTER YOUR BIRTH

From the moment of your birth, we were separated into two hospitals. I saw you only for a second, because I hemorrhaged and was immediately intubated by the ICU team. They saved my life, while you were down the street fighting for yours. I could not see your face, only a large protrusion and tiny little lips – no eyes, no nose, no eyelashes. Yet, you were still beautiful to me.

Three days later, we reunited in the NICU as they transported and wheeled me to your incubator. I could only hold you for a moment. I was too weak to stay but every cell of my body ached leaving you behind. My heart broke, my soul shattered, but I knew I had to be strong for you, even though we were apart. As time passed, my hopeful smiles turned to silence as I quietly watched families leaving with their child in their arms. I wondered if you and I would ever share the same car ride home to Toledo.

YOU SPENT 135 DAYS INPATIENT

135 continuous days of inpatient care equated to 19 weeks, 3240 hours, 194,400 minutes and 11, 664,000 seconds. I only left your side to complete my three, twelve-hour work shifts, which were four hours away. During the drive, I conversed often with you in my heart and with God in my mind. I sang the same song over and over “Thy Will Be Done” by Hillary Scott and the Scott Family. I bought it to play to you when you are older and can comprehend the lyrics. Those long drives offered me solace and time to digest what we were about to endure.

A CRANIOTOMY, ENCEPHALOCELE REMOVAL AND REPAIR

A craniotomy, encephalocele removal and repair were the surgeries you needed. And I worried that you would not  return as the little angel I grew to adore.

Finally at day 128 and at the desired 15 pounds of weight, you left me again for surgery and returned nine hours later intubated in the PICU. For the first time I saw your face! You did have two beautiful brown eyes, with long fluffy, eyelashes and eyebrows. You even had a little button nose and perfectly shaped lips. Your scars were minimal but your swelling was quite overwhelming.

After that, we had two more hurdles to overcome: to reduce swelling and the removal of your breathing tube. The next day you pulled out your three IVs and arterial line and sent a message to the PICU team that you wanted your intubation tube out. They obliged and you soared with flying colors.

YOU WERE LOVED BEYOND MEASURE BY THE WHOLE STAFF

Once extubated, the nurses and PCTs from A7 kept calling the PICU team and wanted to know, “When are we getting our baby back?”  You were so loved beyond measure. From environmental services, to the volunteers, holistic care Maria, pastor Sue, student nurses, Joshua Care team, PCTs and nursing staff. Your new room was decorated with streamers, signs, and pictures.  The staff welcomed you back with cheers, clapping, a tunnel and tears of joy. This unit technically helped raise you from birth.

WE FINALLY MADE THE TRIP HOME

Less than five days later, we made that trip, together, in the car back to Toledo. I am forever grateful to all the doctors and care providers at Cincinnati Children’s. In particular, I am so thankful for Dr. Stevenson who said “we can” when other providers said “we can’t.” And for Dr. Pan who helped unveil your truly hidden beauty.

I don’t know what lies ahead for our journey, but I do know we will cherish every moment we are granted together. I will never allow you (or myself) to say “I can’t.” We can endure all things if we are willing to accept life as it truly is – perfectly imperfect. We will love one another as we were designed to do —unconditionally.

Happy Birthday, Zak!

I Love You,

Mom

Valeka Riegel

About the Author: Valeka Riegel

<p>Valeka Riegel has been a nurse in a Neurological Intensive Care Unit for a Level-One Trauma Center in Toldeo for twelve years, and an Emergency Trauma Nurse for four years. She has also been a Spring Arbor University Adjunct Nursing Instructor for two years. Valeka is a mom to two college-aged sons, Carter (21), and Tytan (19), as well as Zak (12 months).</p>

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  1. […] wrote an open-letter to her son where she said: ‘I saw you only for a second, because I hemorrhaged and was […]
  2. […] wrote an open-letter to her son where she said: ‘I saw you only for a second, because I hemorrhaged and was […]
  3. Joan December 29, 19:58
    What a wonderful story! Zak is a lucky boy to have you as his Mom. I worked in several NICU’s for lots of years, and know what you have been through. God Bless
  4. MG0222 December 30, 10:45
    What a beautiful story. Thank you for sharing!!!
  5. Helen December 31, 21:11
    It's new years eve almost 2018.just finished reading your story.the heartache and the joy came through so beautifully.every emotion was there.you and your baby boy are strong and will survive whatever the future holds.the very best to you.
  6. […] mom recounted the whole grueling experience in “A Letter to My 1-Year-Old Son, Who Had an Encephalocele,” on the Children’s blog. Here’s an […]
  7. […] worried Zakary wouldn't be born alive, and a team of 22 doctors at the Cincinnati Children's Hospital were assigned to look after Riegel. But thankfully, her C-section went smoothly. Apart from the […]
  8. […] face. The growth covered his eyes and nose, leaving only a small part of his mouth visible, Riegel wrote in a letter to her son for Cincinnati Children’s Hospital. The sac was so heavy that it began crushing […]
  9. […] a large protrusion and tiny little lips — no eyes, no nose, no eyelashes,” she wrote in the hospital blog. How is he going to breathe, she […]
  10. […] a large protrusion and tiny little lips — no eyes, no nose, no eyelashes,” she wrote in the hospital blog. How is he going to breathe, she […]
  11. […] a large protrusion and tiny little lips — no eyes, no nose, no eyelashes,” she wrote in the hospital blog. How is he going to breathe, she […]