This is an essay that I have been working on. Please feel free to comment.

First looks


“Did all of your babies look like this when they were born”? Those are not words a parent wants to hear hours after giving birth. What’s more upsetting is waiting almost twenty-four hours to see a doctor who can give you no real answers about your child other than FSH- she has a funny shaped head. This is my child for whom I want to feel joy, whom I have waited all this time to meet. With those words, all there is is the fear of the unknown.

While a mother is pregnant, she waits nine long months wondering about what her child will look like. Will the child have blue eyes, the grandmothers red hair or big feet like the dad? No one bargains that there will be another six months after birth to wait to find out what their child will look like for the rest of their lives. Two weeks after giving birth, you become acutely aware of what happens with a diagnosis of bi-coronal craniosynostosis.

This condition happens in utero and cannot be predicted. For some reason, and there are many, the sutures in the skull, those lines that let the skull free float so that the baby can make it down the birth canal, are prematurely fused. It can cause a child to have no brow ridge, a light bulb like head. There are learning disabilities and sometimes mental retardation. In this society, appearances can mean everything. A funny looking head can cause a child untold grief from family, strangers, friends, anyone who notices that the child looks different. Given the circumstances, everyone notices.

What do you choose to do when all of the choices seem to be so unclear? Do you allow the pressures of society for beauty in everything dictate the choice, or do you leave things as they are? As a parent, how could you sentence a child to a life of ridicule and suffering? Plans are made for surgery. This diagnosis comes at a time when the internet is new, with not much information on craniosynostosis, and any that can be found is very frightening. There are syndromes associated with the condition, and children with those diagnoses have very short life expectancy. Doctors keep scaring you with suppositions of what might have caused this. There is a feeling of pressure from everywhere, with very little relief.

So the parents are faced with making a decision. Surgery is necessary in some cases but not always and the dilemma for parents is most insurance companies see it as merely cosmetic; meaning many of the costs may not be covered. With choosing the surgery comes waiting for just right moment; the baby needs to have enough of their own blood, too soon and the head will not shape in a pleasing way. The anesthesia can cause all kinds of problems too.


Finally, the day comes for the surgery. In the true fashion of Central New York, there is a snowstorm. Thankfully, there is a hotel room near the hospital. The nurses are wonderful. They give you a small bag of the hair shaved off the baby’s head before surgery. There is a small blanket to comfort you and the baby when she wakes up. Minutes turn into hours that seem like days.In the surgical waiting room you are thankful that your child is here for so simple an operation compared the others that you meet. One set of parents are waiting for their child to be diagnosed with a brain tumor. Another person tells you of their mentally retarded sister who is having troubles negotiating her morphine drip. Panic never seems to set in, maybe because it has been growing steadily since the first diagnosis. A five-hour operation has now turned into twelve.

You have a faith, your church is praying for you; you just want to know who your child is. Until now it has felt like there was a stranger in the crib, you know it is all going to change, but not sure of into what. When you first see her, the swelling has not set in yet. The eyes are closed and she is sleeping but it is a face that is familiar and yet different. It will take some getting use to this new little face, and for the first few days, you will not know if she is still the same child, the same Dani, with the same laugh. It will take that long for the swelling to go down, to be weaned off the pain medications, and most importantly, to be able to assess if any damage has been done when they lifted her skull up off her head to reshape and the reattach it.

You never want to go back to that first awful question “Did all of your babies look like this when they were born?” . From the day of the surgery forward, you know you have child who has been blessed by the hand of God. Years latter, you are thankful for the doctors and the people who supported you, but most of all you are thankful that your little baby was able to become who she is today. Beautiful, and a blessing to everyone who has the pleasure of meeting her.