Hello? Anyone?

When I started my blog, I had big plans: highlight Hydrocephalus and those of us who each have surpassed insurmountable odds. It was a great plan in theory, and maybe it will happen one day, but this warrior is worn out!

I’ll spare you the details of my numerous surgeries and ridiculous amount of Dr. appointments since my last post. Trust me it’s MANY and the outcome the same- more unanswered questions and crazy Hydro. symptoms. If you’re reading this, then I’m sure you’ve found some commonality between us, but here’s my predicament: If I were to tell you how difficult things have gone, would there be dead air? My point is I have an amazing family and good friends, but lately the invites, texts and general friendship musings have almost completely vanished. ¬†A few super close friends continue to try but I’m a consistent flake. I know people have their own lives and things, and maybe I’m jealous/bitter, but how do you forget about someone? I know my condition, as do many chronic illnesses, cause a bunch of people discomfort when interacting with me, but I’m still here!!! I’m tired of the raging battle within, but I haven’t forgotten about you so please don’t give up on me. I am still the same person as before but with more scars and a little more hardware:)

Thanks for letting me vent, virtual friend. I don’t feel alone anymore:) Be well!ūüíô

 

Rohan’s Story

Editor’s Note: I’m introducing the first Hydro warrior story on this blog. I will now be highlighting other Hydrocephalus patients’ stories. My hope is that we learn and feel comforted by one another in our times of need.

Rohan’s story was submitted by his mother, Heather.

My son’s story all started at my 12 week scan when i was pregnant. There were  some visible signs of Down Syndrome, due to the space in the neck area, so i was referred to my hospital for another more in depth scan and a Amnio to find out if baby had Down Syndrome. Doctors  took the sample and sent it off but we had to wait a few weeks to get the results and at 14 weeks i had another scan.  During this scan we could clearly see a balloon- like shape bouncing around the back of baby’s head, it was like he had grown a new head! The results from the Amnio had come in and cleared HIM of any chromosome errors. So that was a relief, but what exactly was this balloon growth? They were not entirely sure and had to do further tests, but we were told we should start discussing a medical induced termination. Over the next few weeks, I saw a few specialists, had MRIs, 2D and 3D scans, and x rays- all while  going between 2 different hospitals!l Finally, we were told our son had an Encephalocele and the likelihood of his survival were at about 5%. If he did survive, he would most definitely not ever be capable of walking, talking, feeding himself, going to the toilet on his own,and  he would be wheelchair bound and ( pretty much) completely brain dead. Doctors said  terminating the pregnancy would be the most humane thing to do for us and our unborn child.

On our next appointment, to sign the paperwork to induce early labor at 22 weeks, the Dr. explained what would happen. During this whole meeting, our son- inside of my growing belly- was wiggling around and kicking. I sat there blurring out everything around me and started poking at my belly. ¬†With every poke, I I got a kick back from my baby. ¬†Then, it dawned on me….if he is paralyzed how come i can feel him move? He moves all day long. The doctor said it was due to the baby‚Äôs reflexes. I didn’t believe it, not for a second! After having the doctor look at my baby respond to my poking my belly, the doctor said that if I was having second thoughts he could organize meetings with more specialists. So, I ripped the form up and said, ‚ÄúYes, ¬†that’s exactly what i want to do!‚ÄĚ

The next few weeks consisted of weekly hospital visits: seeing ¬†different specialists, having more and more scans/ MRIs ( some weeks I was having 4 scans and 1 MRI in ¬†a week). Every doctor kept giving the same grim outcome.Until the last doctor, Neurosurgeon, Dr. Robert Campbell. He told me that my baby would be just fine. Dr. Campbell said ¬†he would ¬†definitely have issues with gross motor, and we would be lucky if he would ever walk ¬†independently, and he would likely have global delays and would require a lot of work his entire life, but he believed he would ¬†be just fine. We would need to redefine what ‚Äėnormal‚Äô looked like for him. Dr. Campbell explained how he will remove the balloon looking thing, and explained that he may have to place a shunt (more information would be given later if he needed to insert one). ¬†My pregnancy continued, but we agreed that I‚Äôd go only to 36 weeks because I‚Äôm a Type 1 Diabetic and had lost a child previously at 37 weeks.

By 30 weeks i was looking like a Cabbage Patch: my head was pounding and I felt like death!  I was sent to the hospital where I would have my son (which is a 2 hr drive away). Turns out my symptoms were all related to Preeclampsia. I stayed in hospital until my BP was no longer be stable and they booked  my C-section.  On the morning of Feb 26, 2008, 4 hours before my c section,  I went into labor.  I was rushed by medical personnel to the operating room to deliver my son. Rohan arrived at 36 weeks weighing 8 pounds 13 ounces. He was placed on oxygen after birth as the did ultrasounds and MRIs of the sac on his neck. Later he was diagnosed with an Occipital Meningocele, which is a form of Spina Bifida.  Medical personnel  revealed that parts of his brain were deformed, but (yes) he would live a fairly normal life with different therapies monitored by his specialists.

When he was 6 days old, Dr. Campbell removed his “cele” and he bounced back beautifully, except he started to develop fluid on his brain. Which resulted in his having a VP shunt placed 14 days old. This was hard on his body and, his little heart stopped beating 3 times (!) but he came back and kept fighting. When he was 4 weeks old, we finally got to take him home! As days and months followed he got older, and grew, he was delayed with his gross motor: only just learned to sit up on his 1st birthday. At 2 ¬Ĺ years old, he took his very first steps unassisted, and he walked with a walker for about 6 months. Than no longer needed the help! His balance was poor, resembling a drunk swaying about and tripping up, but- by God!- my son was walking on his own!

My son started in a mainstream school in 2012.  Half way through the year, just after losing his best mate to terminal cancer, we got news that his shunt was no longer working, which lead to him having surgery again.This time he had a small infection in the tube and a large amount of pressure on his brain, which caused him to lose sensation on the left side of his face, and weakness in his legs. There was a fair bit of damage done but, likely, with hard physio he would be able to regain his mobility back and feeling back.

Today my son Rohan ¬†is 8 1/2 in grade 3. He loves Star Wars and Pokemon. He loves cars, footy, and soccer. He loves to learn about the world around him and about different countries. He wants to be a builder like his daddy:) He is a kind gentle little boy but can also be a loud naughty brat! But he is my best friend and the reason for living. I’m so proud to be his mum and so proud I went with my gut instinct and refused to sign those papers! ¬†