What is Craniosynostosis?

As a mother, raising your little one is an endeavor of sheer endurance. You tackle each moment as it arises from the first second of finding out you’re pregnant, to your 20-week ultrasound and into delivery. From there, life becomes a play-by-play whirlwind of decisions and adaptation. Somewhere along the three month mark you think you have conquered life. You are the master of motherhood; little one is sleeping through the night and you finally feel productive at work again.

Yet, alas. As any seasoned mother will tell you, “Be careful not to get too comfortable.” 

My humble dose of reality came when my son developed a nasty case of croup. At three months old, he was new to daycare and the communicable illness that the infant room provides. After a late night wait in the ER, the on-call doctor came in, introduced herself and then zoned in on his head.

“There is something wrong with his skull”, she said in a serious tone. “Was he born with fontanels?”

Confused, I sputtered out, “Fonta-what-now?”

“Soft spots,” she said.

“Yes, of course, I said, it’s right back here.”

What I didn’t know about a baby’s skull (which turned out to be quite a bit) is that they typically have multiple fontanels. The sutures (multiple plates) in their skulls that they are supposed to be born with, sometimes aren’t there. For 1 out of 2,500 – roughly 5% of all babies, arrive into this world with a condition called Craniosynostosis.

Craniosynostosis (kray-nee-o-sin-os-TOE-sis) is a birth defect in which one or more of the fibrous joints between the bones of your baby’s skull (cranial sutures) close prematurely (fuse), before your baby’s brain is fully formed. Brain growth continues, giving the head a misshapen appearance. – The Mayo Clinic. 

Two days later we sat in a tiny exam room with no windows. An army of doctors filed in with their assessment. Their message was simple, “Your son needs reconstructive skull surgery.” I fought to maintain my composure as the neurosurgeon described what the next six to eight months of our lives would be like:

Surgery at six months of age, a five-day post-op intensive care hospital stay, three weeks of recovery at home – daycare was not recommended during recovery, and (the most daunting of all) extreme sleep disruption for an additional six months.

I began to blame myself for not recognizing the abnormality sooner. His head had grown upwards and lengthened like a football instead of rounding out symmetrically. Glancing at my content and smiling first born, I imagined him in extreme distress just as all of the commitments of life flooded my mind. “I just got back to work from maternity leave and I have to take another extended absence? How are we going to function with one more round of sleep deprivation? How will my child cope?” Will his head look like a Frankenstein experiment? My head was throbbing. The stress headache had taken over. 

It has now been two years since his surgery, and my husband and I will be forever grateful for his team of doctors. It was an endurance test but his recovery is complete. If you knew nothing about him and saw his little face for the first time, you would never know about the zig-zag scar that hides under his full head of hair. Since being involved with the incredible online support network of Cranio parents and their child warriors, I have learned that Craniosynostosis is a condition that is still widely unknown or recognized. As a result, some children, like mine, can go months, even years before getting a proper diagnosis.

There are a whole host of medical maladies that could plague our children on any given day throughout their lives. Regardless of severity or duration, as mothers we feel their pain as if it were our own. Below is a short list of resources for any Twin Cities moms or their mom friends who are responding to a cranio-diagnosis. We learn from each other.

For the mothers of Cranio Warriors:

Request your care package. An amazing organization called Cranio Care Bears sources care packages to all of the Cranio children who are having surgery. Launched by two Cranio mothers who live in Seattle, Washington, these packages are mailed all over the United States and the world. Its contents, all donated and generously funded, contain comfort items for both the parents and their children (pajamas, toys, snacks, blankets, a prayer chain). This package helps make the stress of impending surgery or therapy easier to bear. 

Ask to be added to the Cranio Care Bears private Facebook Group. With over 14,000 members, you will find an immediate family and support network. These are the parents who can relate to your struggles and victories. A lovely Twin Cities mom also posts well-wishes for all of the children that the group knows about who are having surgeries. On the day of my son’s surgery, there were four other children all over the globe who also had their reconstructive surgeries. There is comfort in numbers.

The awesome news is that Twin Cities families are in one of the best areas in the country for Craniosynostosis care. There are four major hospitals with their own exemplary craniofacial teams. Your precious little one is truly in the best of hands.

And finally. For the past five years, a family in White Bear Lake with a Cranio son has organized a 5K walk to raise funds for Cranio Care Bears and promote awareness. Each year the number of participating families grows! This event has become our family’s annual anniversary event to commemorate my son’s surgery.

Are you a relative or friend of a Cranio Warrior and would like to help but don’t know how?

The Cranio Care Bears raises funds to send a Cranio Care Package, anywhere in the world, to any Cranio family who requests one. Every family comments about how this package was one of the most important pieces of support that they received during their journey. My husband still tears up when he thinks about that thoughtful delivery.

Within the Cranio Care Packages is their signature piece of hope – the prayer chain. This is the favorite portion of the package for many families, it certainly was for us. The Cranio Care Bears support group goes through 900 to 1,500 pieces of ribbon to construct these chains each month! You can help by writing inspirational messages onto these pieces of ribbon and then mailing them in for assembly.