Kaiden, 1 (Anchorage, AK) | hydrocephalus

KAIDEN, 1 (Anchorage, AK) | hydrocephalus 

written by his mother, Kendra 

photographed by Laura Stennett Photography 

At 23 weeks pregnant, we found out there was a concern with our unborn son. The doctor didn't know what was wrong…just that both Kaiden's heart and brain looked abnormal, and unfortunately she couldn't speculate beyond that.

As with most specialists in Alaska, the only two neonatologists were both booked out for two weeks. After begging, pleading and crying to the point of exhaustion, by the grace of God someone had a cancellation within a week.

February 12 was a joyous day in that we were finally getting answers, but also a somber day, as we were officially thrust into a diagnosis we knew nothing about without any prognosis.

Hydrocephalus.

A word that I couldn't even spell at the time and a condition we knew nothing about.

Hydrocephalus is a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.  

Over time, Dr. Christiansen at Seattle Children's Pediatric Cardiology of Alaska monitored Kaiden's heart. His blockage healed, but hydrocephalus was not going away. No, this was something we would have to learn completely in order to become relentless fighters for his cause.

The neonatologist was able to diagnose him based on his head size while I was pregnant, as well as the fluid measured within his head. After his initial diagnosis in utero, we had monthly measurements. Luckily we were blessed that he was born with his head in the 50th percentile, but unfortunately his head started increasing gradually after 2 weeks. He went from the 50th percentile to the 98th percentile in a month. At that time, we flew to Seattle for a consultation and then scheduled his surgery for the following month. 

On July 27, at 2 months and 1 week old, Kaiden had his first (and I continuously pray his only) brain surgery. It's not uncommon for "Hydro Kids" to have multiple brain surgeries, and the fact that his surgery has been successful so far is a blessing. Sure, he’s developmentally behind, but he’s thriving and I couldn’t ask for more.

The long-term prognosis is unknown unfortunately, because it's the brain and every brain responds differently to the pressure and to surgery. Kaiden is currently behind developmentally and mentally, but we don’t know whether he will catch up, and neither do his doctors.

 

I've suppressed so many emotions while dealing with his condition over the past year. I catch myself asking "what did I do wrong in my pregnancy?” as if I could pinpoint the time I didn't do something correctly that may have caused his issues. While the past year has made me truly appreciate all the little things in life and the small victories with his growth, it's also tough for me to see other kids at his age doing so much more than him. It’s hard for me to want to attend parties or gatherings because of all the comments that inevitably await us.

"Awww he's so small," or "My child is walking already!" Or my personal favorite, "His head is so big!" 

While I'm sure no one means any harm, the comments still sting and cause me to retreat to my own little bubble.

All of the travel and appointments have had a huge impact on my family and two older kids. Over the past year, I've had to leave state for appointments five times. With their dad working four 10-hour days a week and going to school on his off days, the constant back and forth to Seattle is not conducive to our schedules. I don't have time to do anything fun with the family because I spend three to four days at Kaiden’s therapy appointments. I’m so exhausted; when I am off I just want to relax and do nothing, which definitely isn't fair for our other children.

I recently took on managing the State of Alaska Hydrocephalus Association Community Network. The goal is to provide information about hydrocephalus and a support group to those who have been affected by it. Sadly, in the 1.5 years that we've been coping with this diagnosis, I still have not met anyone else to lean on for support locally.

Ideally there should be a local hydrocephalus walk and yearly meetings, but I'm still trying to build the chapter to support that.

If there are any parents reading this whose children are facing a hydrocephalus diagnosis, I want to stress that early intervention is the key to success. Get your child assessed for all therapy disciplines as soon as possible. We did not do this because I wasn't aware this could help Kaiden benefit in the long run. I regret it and wish we had started therapy sooner. Although it will undeniably get tough, don't count them out; every kid is affected differently but every kid deserves just as much love as the next.

Kaiden is the most difficult baby I know, but it's that stubbornness that I love. He's so unpredictable and does nothing by the book. More than anything, I love and admire his strength. 

For more information about hydrocephalus and support from others coping with the condition, please visit: 

The State of Alaska Hydrocephalus Association Community Network (private Facebook group)
The Alaska Pediatric Hydrocephalus Foundation (Facebook page)