Emma, 8

Kid with hydrocephalusImagine trying for 7 years to conceive a precious little baby of your own and that day you found out is literally the “Best Day EVER.” Your heart leaps out of your chest and you can’t possibly imagine how all the years of pain from trying and not conceiving just vanish. Everything you have been through – the ups and downs, the tests, the results, and the heartache, the wondering – all of it vanishes and you are so elated that your prayers have finally been answered.

So you nickname your little baby, like lots of people do. Our perfect little baby was nicknamed “Jellybean.” That is what she looked like on her first ultrasound, so it seemed to fit. From the moment I found out I was pregnant I knew she would be special, that she would touch lives, that she was by far the greatest love of my life. My pregnancy went great, I loved being pregnant, it was the best feeling ever. All of the tests came back that our “Jellybean” was perfect.

Then, after 38 weeks, I gave birth to a perfectly healthy baby girl. Emma weighed a very healthy 8lbs 6 oz. It was the most amazing feeling. All her check-ups went well. She was 98% on height and weight, growing well, development was always on-target. We went to our 9 month routine check-up and the pediatrician did his normal checks, height 98%, weight 98%, head circumference – off the chart. So, being a very thorough doctor, he ordered a head CT just to rule things out; but he really didn’t expect to see anything. So the day after her 9-month check-up we piled into the car and took our sleeping angel to the hospital for a CT scan. She did wonderful, wasn’t very happy she couldn’t have her bottle, but she did well. The hospital informed us that the results should be into the doctor’s office in about 48 hours and sent us on our way.

So we left the hospital to go eat some breakfast and then we received a phone call from the pediatrician’s office that we needed to come see him. Two hours after our not-so-much- of-a-big-deal-CT-scan, we go into the pediatrician’s office and are taken right back and asked to have a seat. As I am holding my healthy napping nine month old, the doctor walks in with this desolate look on his face that just made me hold her tighter. The worst day of my life was about to take place. Our pediatrician looks at us and says, “It’s bad. Emma has something called hydrocephalus, and it can be life-threatening if we don’t do something. I have already called the neurosurgeon and consulted with him. We need to schedule an MRI and get her scheduled for brain surgery for a shunt placement as soon as possible.”

My life, her all too short life, flashed in front of my eyes, I felt that the most precious thing on this earth was going to be taken away from me and I was hurt, I was angry, I was so scared. So I sat and tried to understand what the pediatrician was explaining, with not much success. This term “hydrocephalus” was not something I had ever heard of, I knew nothing about it except “We need to do something because it could kill her if left untreated.” Our pediatrician then asked if he could pray with us. So we gathered in a circle, held hands and prayed that God would watch over our baby, Jellybean. That prayer is what got me through the next journey of our ride through a place I never wanted to go.

We were scheduled for another CT scan the next morning to get a different angle and then the following day for an MRI so they could see if they could find what was causing it. All I could think was, ‘You said it was an emergency so why aren’t you fixing my baby now?’

After a long weekend of waiting we saw the neurosurgeon for the first time and he told me to put my baby down. So I did, and he just watched her. After a few minutes he looked at us and very calmly said “I am not doing surgery on your child right now so take a deep breath.”

He was very careful to explain what hydrocephalus was in medical terminology but also in parents’ terms. “Her piping is blocked; it needs to be fixed, like it’s bad plumbing. But for now she is showing no signs of it affecting her so we are going to monitor her closely.”

So we monitored her for the next few months and she did well, no signs of it affecting her growth or development. Then, at 14 months, we had another check-up and her head had grown again. So now it was time to do our first shunt placement. Handing over your baby to these strangers who didn’t know her, don’t love her and expecting them to do brain surgery on her and give you back your baby, it is the worst fear imaginable. We had to wait 5 long hours for surgery, with the only updates being, “They started, she’s doing fine, it’s over the doctor will be out shortly”.

He comes out of surgery and said, “Surgery went well.” And finally they let me go back to see my precious baby. She is trying to wake up from surgery, she’s scared, crying, her hair matted with iodine, IVs, heart monitors, bandages on her tummy and on her head, and I want to just hold her and cry. We made it through the first of many scary surgeries.

You learn that every time you think you know what to look for, you know how to be proactive, you know how to know that an episode is coming…you find out you don’t really know. You find out that as she grows, as she gets bigger, that things change. Her symptoms change, that she has always had high pressure hydrocephalus, which means there is too much cerebrospinal fluid in her head and they have to set her shunt to drain it and know within the past year she started showing different symptoms, ones that you are not used to. So when it finally clicks that this is a new issue with her shunt, then you are fighting a new battle and trying to learn a new set of symptoms to watch out for. Now she is having low-pressure headaches, her shunt is draining too much. It’s such a fine line of where her shunt needs to be set to keep her from being in pain or from it causing damage. Every day is a learning experience.

Emma is eight years old now. And after having had six shunt revisions since her shunt placement, it doesn’t get any easier. We are learning everyday what her symptoms are and trying to learn how to address them. She understands what she has to go through and why, and she never complains. She tries to help explain it to others so that they are educated, also. She is the reason we joined the Hydrocephalus Association. We need a cure, we need to educate others before it’s too late for them. I never realized how many people were affected by this condition until I joined with HA in fighting for a cure. It affects so many people and we have so little research. So our family started chairing the Columbia HA WALK three years ago to help raise awareness, to educate those who are affected and their families. To help raise funds for research so that one day we might find a cure and keep other families from having to go through what we go through every day worrying about Emma. We are hoping to expand our WALK this year and make it a huge success and huge win for the hydrocephalus community as a whole.

We have to drive two hours to see our pediatric neurosurgeon anytime Emma has an issue, needs a check-up, needs a revision.

Only through vigilant parents, family members, pediatricians and education will our loved ones be okay, have a chance at a normal life. BUT we need help to raise awareness, to bring in doctors that know how to treat hydrocephalus, to educate families on how to care for loved ones with hydrocephalus. It’s not just children who suffer with this non-discriminating condition. It can affect anyone at anytime and we need to know how to cure it.

As a parent, I always thought I would be the one teaching her, but she has taught me so much about how to be strong, how to fight, how to trust in God, how to love like you never know if you will have another chance. Our “Jellybean” Emma is more of a blessing than I ever imagined.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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