September is #Hydrocephalus Awareness Month. Join me and @HydroAssoc as we #MakeWaves and spread the word about the condition affecting the lives of over 1 million Americans. #HAM2016
About a year ago, I was contacted by a British production company. They found me on several sites including this blog. The Producer told me they were going to do a documentary about hydrocephalus and wondered if I would share our journey. I was thrilled to be able to bring awareness to such an underfunded and unrecognized condition that affects so many people. Little did I know at that time, the show would air on TLC! The exposure would be beyond anything I’ve ever seen.
We filmed for 4 days in January. The Producer and Director were superb. They were very invested in the piece and had a wealth of knowledge about the condition.
I’m pleased with the result. You can view it online here for $1.99 in the US. https://youtu.be/Ns6au-0Gulo
And, here is a press release from The Hydrocephalus Association:
They included a Parkerism, which made everyone smile.
“If I took a hot lava bath, would that be a problem?”
I’m proud we have been able to help bring this condition into national media.
Our days are now filled with mundane things. Parker is in 1st grade at a public elementary. Her school days are packed with reading, math, science, art and other essential curriculum. When I ask her what was her favorite part of the day, invariably, she says recess.
It is easy to forget things would be completely different depending on where we live. I take for granted that in the Western World, a fetal diagnosis means you are watched by a High Risk OB, and your child will have a Neurosurgery consult at birth or before.
Parker received her shunt the day after she was born. It can be scary for some to think that their infant will have brain surgery. I believe it is a blessing. It is truly a life saver.
What would our lives look like 8,500 miles across the world?
Meet two year old Roona Begum from Tripura, India. Like Parker, she was born with congenital Hydrocephalus which caused spinal fluid to accumulate to such a degree that in by the time she was a year old her skull had swelled to 94 cm when the average size is 46 cm. The compression on her brain was immense and heartbreaking.
Her parents Fatima and Abdul were desperate for help however coming from a very poor rural part of India, they didn’t know what could be done.
Through the help of two Norwegian students who started an online campaign to raise awareness and funds for Roona, a charity stepped in and raised significant the money for Roona to travel to Delhi to be seen by a leading Fortis Hospital Neurosurgeon Dr Sandeep Vaishya and for surgery.
On the first meeting Dr Vaishya didn’t know if Roona would survive as her Hydrocephalus was so severe. However he decided that emergency treatment was necessary.
Roona subsequently underwent five surgeries over the course of a few months to drain excess fluid from her head and reduce the size of her skull. She spent 105 days at the Fortis Hospital before being discharged.
Meet Roona AFTER SURGERY
Her Neurosurgeon who has recently assessed Roona again has been surprised by the extent of her recovery. He says he sees a lot of improvement which he didn’t expect. She has gained weight and her activities have improved a lot.
Her parents are delighted and say they never expected their daughter to survive but now they have hope and are thankful to the doctors and all the people who raised funds to support them.
Roona is miraculous. She is a beautiful snowflake in our Hydrocephalus family.
The question of prognosis invariably is one of the first things a newly diagnosed family considers. It is difficult to hear there is a complication with a fetal brain. The unknowns are intense and agonizing. Getting caught up in the what-ifs can be all-consuming.
Somewhere around the 27th week of gestation, we were unable to accurately measure the ventricles in Parker’s brain. Ultrasound after ultrasound, we watched the ventricles increase exponentially. With each Perinatology visit, we would sit white knuckled in the waiting area praying for a ventricle stabilization or a decrease. With each visit, we watched Parker’s fluid increase, and her brain compressed until it was a fine sliver.
It was at that time that I felt peace. I know it sounds completely absurd. But, it is a fact. I realized there was very little I could control. I was unable to stop the increasing head circumference. I was unable to stop the fluid. But, I could control how I reacted to the terrible situation. I could relish in the fact I was pregnant. Many families struggle with infertility. However, the miracle of a child was growing inside me. That fact should translate into joy and celebration. The worry and fear lifted.
This brings me back to prognosis. Hindsight is a wonderful thing. While I had abandoned the anguish, I wanted to prepare. The ultimate outcome of a person diagnosed with congenital hydrocephalus varies wildly. I have likened our children to snowflakes. Each are very beautiful. And, every “snowflake” is unique and precious. I have yet to find two children who have matching conditions with a matching outcome. Hydrocephalus comes with its own complicated web of intricacies. There is no way to predict what may become a challenge with one child and not with another.
Appreciating our snowflakes for their exceptional gifts is of the utmost importance. My goal is to strive to never let a moment pass that I’m not thankful for the wonderful child I have been given. She is truly my blessing.
It’s hard to articulate how much one little girl can change your world. I wonder what would have happened if Parker had not been diagnosed with Hydrocephalus? The diagnosis doesn’t define her, but it has definitely made our path a different one. I’m fiercely passionate about Parker and all of her Hydro buddies. We have met a lot of awesome people along this journey. While I would take her pain away in a heartbeat, I have to think Hydro was brought into our lives for a reason.
Yesterday was Parker’s 5th Birthday. It brings tears to my eyes to think of how much love I have for that little girl. You are my sunshine, Parker Elizabeth, when skies are grey.
The Summer has been rolling along way too fast. I can’t believe it’s already August and Parker will soon be back in school. We decided it was best for her to take another year in Pre-K to fine tune her fine motor skills and gain some maturity. Last year was a good year for her to gain new skills but she was literally the youngest child in the entire school of 200 Pre-K children. I know this is something even parents of typical children who have August birthdays struggle with. And, my due date was actually Oct 15th, so she really wasn’t supposed to be here just yet.
Early in the semester 2012, we started Parker on an IEP for Occupational Therapy for assistance with fine motor skills. This has been the first time since she was one that she wasn’t developmentally with her peers. Her fine motor skills are delayed. Over the school year, we had seen minimal progress with her writing/drawing specifically. She did improve with cutting with scissors. But, I’m so eager for her to learn how to write her name, which is a skill that should be mastered by the end of Pre-K.
Parker has little interest in drawing. I’m not sure if its because she isn’t very good at it or why. But, this summer she has had one on one OT at Special Care and I love the results! In just several weeks, she drew this
I’m hopeful this momentum continues into the school year.
We had a family vacation planned to Breckenridge this week. Last Friday, Parker became ill with a bug she picked up at daycare. It became obvious the illness she had was contagious and she wouldn’t be able to travel :-(. Sadly, we cancelled our tickets and got antibiotics.
By Monday she was feeling better and was no longer contagious. Since the rest of our family was in Colorado, I felt it was a good time to take a little road trip to Dallas and visit The American Girl store. So, on Tuesday morning, I surprised Parker and packed up our car.
Parker loved the store and we probably could have spent all day there. We took a long time picking out her doll and have a wish list full of wanted accessories and clothes.
We also met one of our favorite Hydro families, the Hannons and their sister Staci for dinner at Uncle Julio’s. It was wonderful to see them and spend time with our buddies on short notice.
So, what was a sour and sad family trip wound up with a sunny side.