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.”