Grief

Your Infant has Craniosynostosis

Your Infant has Craniosynostosis www.herviewfromhome.com
Written by Jessica Kromer

I am writing this post from a PICU hospital room. Aria, my 4 and a half-month-old daughter, has 3 IVs in her body, a white turban-like dressing covering over 30 stitches from ear to ear, and morphine, Tylenol, and oxycodone in her system. The faithful pink and grey giraffe, Lola, is by her side and a felt panda bear blanket from the hospital keeps her warm. Aria sleeps while little sigh-snores fill the silent room.

Twenty-four hours ago, a pediatric neurosurgeon drilled anchor holes in Aria’s skull and cut a 2 inch wide strip of bone out of her head. He also cut two lines on each side of her skull. Then a craniofacial surgeon completed the near total cranial vault remodeling by pulling back the skull pieces to reshape Aria’s skull.

I wrote in the waiting room while anticipating calls from the nurse with updates. The last time Aria saw us, a concert emerged from the hospital room as a group of loved ones tried to distract her empty tummy with songs. After an hour passed of sterilizing, answering questions and trying to comfort Aria, a group of nurses and doctors took her to the surgery ward. My husband, Joel, and I stood as long as possible waving bye to our crying child.

The surgery lasted about an hour. Once the anesthesia wore off Joel and I reunited with our girl. She laid peacefully on a little hospital bed unaware of what exactly happened.

These are the results of Craniosynostosis.

About one in every 2000 babies will be born with Craniosynostosis. Our daughter is one of them. There are different types, but Aria has the most common, sagittal synostosis. The result of sagittal synostosis is a long head that is narrow from front to back and ear to ear. Her fibrous sagittal suture fully fused into bone prematurely, which prevents her brain and skull from properly growing with age.

Without surgery functional problems occur and can range from developmental delays, mental retardation, blindness and death. The fix combines the talents of a pediatric craniofacial surgeon, a pediatric neurosurgeon, a pediatric anesthesiologist, and a handful of amazing nurses, nurse practitioners, pediatricians, and more.

When Joel and I first found out Aria needed surgery, we were not shocked. Aria’s head did show signs of the diagnosis quite early, and her dad needed the surgery 25 years ago. In fact, right after Aria arrived earth side, Joel asked the doctor if she had a soft spot. At the time, the doctor answered, “Yes.” However, time did tell, and surgery was the only solution.

In this moment, our little family is thankful for living only 4 hours away from one of the top pediatric craniofacial surgeons in the United States who completes this surgery almost daily. However, as I stood hunched over the hospital bed with Aria’s hand wrapped around my finger I couldn’t help but think of the children who won’t have the surgery to fix Craniosynostosis or other diagnoses.

At times like these, it’s very easy to only think of my family and my child. My husband’s former co-worker, Hasta, changed my nearsighted perspective.

Hasta is originally from Bhutan, but conflict in the area forced him to live in a Nepal refugee camp. He lived in the Nepal refugee camp for many years before arriving to the United States. When Joel told him Aria needed surgery Hasta reminded us how fortunate our family is. In Nepal, if Hasta’s child had Craniosynostosis he and his wife would accept the fact that their child would develop developmental delays or possibly die.

This fact kept creeping into my mind as I waited for Aria’s surgery to be complete, and the fact is still present as I stand at her bedside. No matter how many IVs or stitches are in my daughter, no matter how much pain she may go through, and no matter how stressful this process may be, we rest in the peace of a successful surgery and most likely a successful recovery. We rest in the peace of returning home to a comfortable life.

For many children, parents and families around the world there is no peace.

  • Families are starving.
  • Families are getting bombed.
  • Families are trying to escape war and persecution by traveling to foreign lands for safety. Once families get to foreign lands there is no promise of being able to enter.

The list goes on.

Families all around the world are our sisters and brothers. So, I have a request to the person scrolling through this writing. Give right where you live or half way around the globe by volunteering, donating, or showing support. No matter what, please do what is possible to provide some peace to a family or families in need.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, or the smallest act of caring. All of which have the potential to turn a life around.”

-Leo Buscaglia

Your Infant has Craniosynostosis   www.herviewfromhome.com

Your Infant has Craniosynostosis   www.herviewfromhome.com

 

About the author

Jessica Kromer

Jessica Kromer is a freelance writer and mother. She is smitten with parenting along side her husband, Joel, and experiencing their first child together. Of course, a lot of coffee, outdoor activities and Netflix help keep the Kromer family afloat. These days Jessica’s time is filled with helping her daughter Aria grow and writing about all the experiences of parenthood. You can read more of Jessica’s writing at www.purposefullivingblog.com.

6 Comments

  • Prayers for your little one, Jessica. How profound that you can see the bigger picture at your time of difficulty. Yes, children everywhere are suffering and we all are responsible for their well-being. Thank you for a heart-felt reminder that no one gets off without a hitch of some type~

  • This brought tears to my eyes. You are such an amazing momma. I know how terrifying it is to have your tiny baby in the hospital for surgery, but you still saw the big picture. I’m so glad your little girl got the help she needed, and I hope she’s feeling better!

    • Thank you Samantha for the kind comment and for reading our story. She is feeling great since the surgery and is meeting her milestones. She’ll be getting a helmet this week to help her head reshape.

      -Jess

  • Our grandson had similar surgery at nine months of age. It made me so sad to see his poor swollen eyes, so that he couldn’t open them and see mom and dad. Once home from the hospital it did not slow him down. He had the surgery repeated when he was in early grade school because things didn’t heal correctly. Again did not slow him down. Post open day 1 he was in the playroom, IV pole, tubes and all. So thankful for skillful, talented Dr’s. And other Hospital staff

  • I’m a cranio mom and our 3rd baby had an almost-too-late diagnosis of sagittal synostosis as well. One of the things that got me through surgery, recovery and helmet therapy was “it could be so much worse” as you mention with your husband’s coworker. HOWEVER, we do need to own and to grieve this process as well. This blog post is under the category “grief” and we are allowed to be sad and terrified that our babies are having skull surgery. It IS a big deal and we need to own that. My baby’s eyes were almost swollen shut, he had 2 IV’s in his feet and was so covered it wires it made it hard to hold and console him. He did wonderful and pulled through amazing. It might not have been heart surgery or something more serious, but for us – it was a big deal and it was serious. Cranio families: own how emotional and hard this process can be. It is an easy fix in the grand scheme of things, but we’re allowed to feel scared and overwhelmed as we go through it.