Our daughter Lilah’s first haircut happened much earlier than we expected.
Her “salon appointment” was scheduled at 6 a.m. the Friday following her four-month birthday. And my dreams of documenting each snip were made impossible as I was ordered to wait in a sterile white room with other nervous parents.
That first haircut would prove to be one of our worst memories as parents.
The months leading up to our daughter’s arrival were relatively easy. I found out I was pregnant on our six-month wedding anniversary after only a couple of months actively trying. My pregnancy was so uneventful I had to exaggerate my morning sickness symptoms (barely any) and my weight gain (a whopping 15 pounds) in an attempt to bond with fellow miserable mamas-to-be. My labor story was just as boring: a day after my due date and just 20 minutes of pushing, Dan and I met our baby girl.
Sleep deprivation and roller coaster emotions were unpleasant realities for me, but my new family of three made these easier to power through. I was consumed with my perfect daughter and focused on my dreams for her future.
A week before Lilah’s four-month pediatrician’s appointment, Dan announced plans to take off work to join me. I didn’t think to question him at the time and welcomed the extra pair of hands, but later questioned why he decided to attend this appointment. “I had a feeling something wasn’t right,” he recently told me. “But I didn’t want to alarm you, plus my premonitions aren’t exactly always correct.”
After all, Dan had spent the weeks leading up to the highly anticipated gender reveal talking to his future son in my growing belly. When we found out the mystery baby was a girl, Dan was stunned.
I felt a moment of guilt when I realized his dream of throwing a football around with his little boy was going to have to wait. Also convinced the baby was a boy, I admit feeling relief when I realized my first foray into parenthood would be filled with pink dresses instead of dirt stains and soccer balls.
After that, we spent our weekends combing through books of baby girl names and shopping for her nursery. One of our favorite purchases was a baby book of firsts. I was especially excited about the “First Haircut” page, imagining taking her to a fancy salon, showering her with the delight of being a girl at the spa for a day.
But I wouldn’t get to decorate this section with any of those happy memories.
At Lilah’s four-month check-up, we learned her head circumference was “off the charts.”
“This will just give us peace of mind and rule out something like water on the brain,” the doctor said as she handed me a piece of paper with the phone number to call to schedule an ultrasound. She probably saw the panic on our faces.
The two days leading up to Lilah’s ultrasound dragged. Of course I researched worst-case scenarios, reading about hydrocephalus in complete shock because I knew nothing about it.
“It’s like the day of a big test,” Dan explained with confidence as we drove downtown on the day of the ultrasound. “You’ve prepared, but you’re nervous until you receive a good grade. We’re just waiting for Lilah to pass with flying colors.”
I so wanted to believe his optimism as the technician moved the probe around Lilah’s head.
But she didn’t pass with the flying colors. On the way home, we received a call from our doctor: “The ultrasound revealed fluid in the ventricles of Lilah’s brain. You need to go back now.”
The ultrasound showed the worst-case scenario: There was as much as 10 times the amount of fluid than normal. We needed to get to the emergency room ASAP to meet a team of emergency and neurosurgery doctors and nurses.
This had to be a nightmare, I remember thinking. I begged Dan to pinch me as he drove more than 70 mph on Lake Shore Drive.
In the backseat our little girl slept in her carseat, completely unaware of the life-threatening condition manifesting itself inside of her sweet, precious head.
When she opened her eyes as we arrived at Ann & Robert H. Lurie Children’s Hospital’s crowded emergency room, I saw the whites of the top of her eyeballs as she struggled to look up to me. There was bulging and swelling around her forehead, symptoms I would later learn were classic for hydrocephalus.
We were escorted into a trauma room almost immediately, passing by children with bumps, bruises, fevers and other ailments that seemed so minor, so normal in that moment.
“It’s a good sign she is so angry,” said a nurse, attempting to give Lilah a pacifier as she screamed at the top of her lungs. “She’s certainly alert.”
Just 12 hours later, following blood tests, MRIs and monitoring, Lilah was escorted away from us to undergo surgery to implant a shunt that would drain the fluid, which we learned was putting dangerous pressure on her developing brain.
My perfect daughter was now at high risk of having permanent brain damage, developmental delays and other lifelong side effects.
After the surgery, the surgeon handed us a plastic bag labeled “Baby’s First Haircut” with the hair they shaved for surgery. When I finally got to see her after surgery, her head was swollen, her skin paper white and she was wheezing.
I became a different mother that day.
Despite Lilah’s quick recovery—apparently babies are quite resilient—I slipped into a dark place that surpassed the baby blues following her delivery.
I began obsessively looking through Lilah’s photographs at her swollen forehead and sunsetting eyes, blaming myself for not catching on earlier that something was wrong. I would hysterically cry at the mere mention of Lilah’s hydrocephalus and was angry that my baby was diagnosed with an incurable disease.
It’s taken me several months to move past the blame and self-loathing—and to realize no parent can anticipate something as unexpected as a diagnosis like hydrocephalus.
I still have occasional moments of doubt and fear.
However, now every milestone is extra special and we appreciate our little girl even more than the first time we laid eyes on that positive pregnancy test.
Perhaps Lilah’s first haircut isn’t such a bad memory after all.
What is it?
Hydrocephalus is the buildup of fluid in the ventricles deep within the brain. The pressure of too much fluid can damage brain tissues and cause a range of impairments in brain function.
Hydrocephalus can happen at any age, but it occurs more frequently with infants and adults 60 and over.
Some common signs in infants include:
- An unusually large head
- A rapid increase in the size of the head
- A bulging or tense soft spot (fontanel)
- Poor feeding
- Eyes fixed downward (sunsetting of the eyes)
- Deficits in muscle tone and strength
Source: Mayo Clinic