It is Hydrocephalus Awareness Month. In this week’s installment of our history series commemorating our 30th anniversary, we break from our traditional interview format and share a piece written by our current Chair of the Hydrocephalus Association Board of Directors, Barrett O’Connor. Barrett was elected chair last October and assumed the position this past January, replacing Paul Gross, who served for 2 terms. She is as an outspoken advocate for hydrocephalus awareness and a mother of a daughter with hydrocephalus.
By Barrett O’Connor, Chair, HA Board of Directors
It had been about nine years since the last shunt emergency. I guess I was out of practice, enjoying denial or just too busy keeping up with the demands of family life to be adequately prepared for our return to the emergency room.
The last time my daughter went from the ER to surgery she was 14 months old and could not articulate her symptoms. She was smiling and laughing, but she kept falling down. When she fell over backwards as I was reading her a bedtime story, I could no longer ignore my concern. After much gnashing of teeth, wringing of hands, and agonizing over whether to drag her to the ER, I decided we needed to check to see if her shunt was working. It was around 9:00 p.m. Fortunately, there was no traffic for our 60-minute drive to the ER. The nurses thought I was crazy because she did not look distressed. It took a while to get the CT and shunt series done but we knew immediately that there was a problem because the pediatric neurosurgeon resident on call arrived in the ER right away. The ventricles were enlarged. We headed to surgery in the middle of the night. My daughter’s doctor was not on call. I didn’t know the surgeon by name or reputation, and had never met him before. I was not sure how long he had been doing this, but it didn’t matter because she needed the surgery and he was the only one available to do it. I felt so helpless and vulnerable. The surgery went well and my daughter recovered quickly, but I did not.
I needed help. I turned to the Internet and found the Hydrocephalus Association. I attended conferences, joined the HA Board of Directors, attended meetings, attended WALKS, tried to meet others with experience dealing with shunts, tried to meet doctors, and held fundraisers and 5K events to fund medical research in an effort to push for change. Working with HA has made me feel like I am doing something to make the future better for my daughter and the many others going through the same or worse. That helps. Perhaps, I will be better prepared in the event of an emergency in the future.
Flash forward nine years. I have just been elected Chair of the Board for HA. On the day of the January HA board meeting, my daughter is home from school because she does not feel well. She has a headache. No fever, no sore throat, no congestion. Four other kids in her class are out sick too, so I am not that concerned. She stays home for three days and then feels better.
Three weeks later, it is a typical Tuesday morning. My daughter has an ice skating lesson at 6:30 a.m. She eats breakfast and changes in the car as we drive to school. She is bubbly and happy when I drop her off at 8:15 a.m. I am on the telephone with the CEO of HA when I get the call from the school at 10:45 a.m. My daughter has a headache that is worse than a normal headache. I pick her up and suggest we head to the ER for a shunt series. She just wants to come home and go to sleep. I give her Tylenol and put her to bed. She wakes up an hour later and feels much better. The next day she says she feels so-so. After much gnashing of teeth, wringing of hands, agonizing and a call to her pediatrician (where I hear myself tell the doctor that she had a headache that was worse than normal-duh), I call and try to schedule an MRI to avoid exposing my daughter to more radiation. I get a message that the first available appointment is one week away on the following Tuesday. This is not acceptable. I need an appointment sooner than that because I don’t want to wait over the weekend. After much effort, I get an appointment for a CT the following day.
The next day, my daughter feels better in the morning and wants to go to school. I insist that we go to the appointment to rule out any problems with the shunt. Honestly, I do not want to go to the appointment any more than my daughter does. She brings her backpack so she can go to school after the appointment. Shortly after the tests are completed, I get a call from the physician’s assistant telling me that the ventricles are enlarged and to check my daughter into the ER, which we do.
My daughter’s doctor is out of town for the day. I have never met the doctor on call. The resident wants to tap the shunt and have me sign consents. The doctor on call is in surgery and will see me just before my daughter’s surgery. My daughter is telling everyone that she feels fine. I sit there in the ER and look at her and wonder. I feel helpless and vulnerable. Did I know the shunt was not working? If so, why did I not pack a bag? Why did I not bring her to the ER on Tuesday? Why was my daughter not vomiting, lethargic, or visibly affected by the shunt problem? I realize that I am no better prepared for this day then I was for the last emergency surgery nine years ago.
I am also struck by the fact that they can now take her temperature with the sweep of a wand over her forehead. A cuff on the bicep can measure her blood pressure. A red dot taped on her finger can measure her blood oxygenation. The stickies on her chest are all that is needed to hook her up to a monitor to tell us her heart rate. She has two intravenous lines that are connected to machines that beep when a dose of medicine is completed, a line is occluded, the machine is not plugged in or the battery is running out. Yet, there is no test, no wand, no dot, no sticky that can help us figure out if the shunt is working. Instead, I have to fight my own anxieties, my uncertainties, my medical care providers and make the 60-minute drive to the ER in the hopes that I am wasting everyone’s time. There has to be a better way.
My daughter appears to have recovered very quickly from the surgery, but, like 9 years ago, I have not. I am so grateful to all of the nurses and doctors who took such good care of my daughter. We are so fortunate to have access to quality medical treatment. Yet, I just can’t get over the feeling that there has to be a better way and we need to find that better way soon.
It is my hope that you will join me and the Hydrocephalus Association to help us to find a better way to eliminate the challenges of hydrocephalus. It is also my hope that on the journey of working towards finding a better way, we can also help ourselves to be better prepared for what the future will bring.