Alex’s diagnosis

As promised, here’s a more in-depth explanation

Dating back to when Alex was about a year old, we (Claudio & I) started noticing his head was quite large compared to the rest of his body. We brought up the concern at his 12 month check-up and were reassured by Alex’s pediatrician that a baby’s head may grow at a disproportionately accelerated rate compared to the rest of the body. We felt Alex would simply grow into his large head when he got a little older. Up until Alex’s last check-up at 24 months, he was considered as having “normal” head growth (according to the growth chart). At 2 years old, Alex was suddenly in the 125th percentile, compared to being in the 98th percentile at 18 months.

After the 24 month check-up which took place in December, we were scheduled for an appointment at the Children’s Hospital in Zurich to examine Alex’s fine and gross motor skills to see if this had any correlation to his rapid head growth. The pediatrician found that Alex met, if not exceeded every single skill she tested – from his ability to climb stairs, to putting puzzle pieces together – meaning he didn’t have any developmental delays. The pediatrician then scheduled an MRI for a few weeks after the Christmas holiday to examine the brain itself for any irregularities.

The morning of the MRI Alex was relaxed and just his happy little self, which definitely put me more at ease. He was under general anesthesia for the duration of the MRI and woke up just fine. We were able to go home a few hours later. The following day we received a phone call explaining that the radiologist found something in the scan, but not to worry because it was treatable and nothing life-threatening. She explained that Alex has a condition called hydrocephalus and that his particular case was special. Hydrocephalus is a condition that currently is treatable, but not yet curable. It occurs in approx. 1 of every 500 children, and treatment varies due to the child’s specific circumstance. I must say those were hard words to swallow since we simply thought Alex had a big head perhaps due to genetics and had brushed off the thought of something being wrong at his 12 month check-up. I had many questions for the doctor, and she explained to the best of her knowledge, yet couldn’t answer specific questions geared more towards neurology. I was told we’d have to wait 2 weeks to have a consultation with the neurosurgeon and get a better understanding of what was going on with Alex, as well as treatment options.

Those 2 weeks of waiting were hard. I did a lot of research online, trying to understand more about hydrocephalus, its causes, symptoms, and treatments. Each day I thought of new questions for the neurosurgeon and typed them up in a Word document. When the date of the appointment finally arrived, I was nervous, but eager to learn more about Alex’s condition.

The morning of the consultation, we were first greeted by two pediatricians, a neurosurgeon, and Alex’s MRI results on a large computer screen. We sat down in a circle and the neurosurgeon explained that Alex has a build-up of cerebrospinal fluid (CSF) in the third ventricle of his brain, which he believes to be congenital. It’s 2-3 times the amount of normal fluid that should be there. The problem is not due to an overproduction of fluid, but instead there’s a blockage between the third and fourth ventricle, which is not allowing enough room for the fluid to pass. Based on that, Alex qualifies for an Endoscopic Third Ventriculostomy (ETV), which is the reason his particular situation was considered “special”, since not many qualify for this surgery. Through an ETV, the blocked duct will be repaired to help the fluid re-circulate through the ventricles and back into the bloodstream. Most children/adults diagnosed with hydrocephalus require a shunt, but Alex’s case luckily does not (I say luckily because there can be many problems associated with a shunt). We’re very glad that Alex qualifies for an ETV as it is less invasive and has proven to be more successful in the long run.

As for the neurosurgeon, he has 10 years of experience performing ETVs (granted it is a fairly new treatment) and has operated on children as young as 1 year of age. It doesn’t make it any easier per se, but we feel Alex will be in good hands. Our next trip to the hospital will be February 23 to check-in for his surgery, which will take place the following day. The recovery will be an additional 4 to 6 days in the hospital, during which time Alex will have a MRI to determine the surgery’s success. We’re remaining optimistic about the surgery and we look forward to Alex’s complete recovery. We’re thankful Alex was diagnosed early, has not suffered any brain damage, and other than his hydrocephalus, he’s just a normal, happy, healthy 2-year-old. The neurosurgeon explained it’s entirely possible for Alex to live a completely normal life, play sports, and grow/develop at the same rate as children his age. We will just have to monitor his brain through MRIs, to stay alert on any potential problems.

For more information specific to hydrocephalus, I found this to be a great resource, as well as the YouTube below.


7 thoughts on “Alex’s diagnosis

  1. Joan Lee

    dear Steph and Claudio, I am impressed by the skill of your doctors and the encouraging efficient treatment. I pray for continued optimism and courage in your family. Much love and continuing appreciation for my wonderful memories of “an American-Swiss Family” in Zurich.

    1. Hi Joan, Thank you for your encouraging words! We feel being optimistic is the only way to go – esp. with such a healthy boy and a great team of doctors. We love reminiscing about last summer and the wonderful time we had with you and Kathy. Love, Steph

  2. i don’t know what to say, i’ve been following your blog, following Alex’s activities, and this post surprised me. Everything he has gone through, he’s a very brave boy. Hope things turn out just the way you wanted to.. big courage!! god / buddha blesses him!!

  3. Patty McHugh

    Thanks for the indepth account of all that you guys have been going through! The explanations, through your words and that informative video, were very helpful in my understanding of Alex’s condition. I am encouraged by the positive attitude of this procedure Alex qualifies for. It sounds very hopeful that it should take care of the problem, with no additional steps needed, except future MRIs. We know it won’t be easy to keep Alex in the hospital for a week, but he will probably make a lot of friends! He seems to do fine where ever he is!
    Our thoughts and prayers will remain with each of you!!!
    Mom and Dad

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