What I Wish I Could’ve Told My Parents When I Was Diagnosed With Hydrocephalus

I was born with congenital hydrocephalus, and had a shunt put in when I was less than 2 months old. I grew up with this condition being hidden from me, only uncovering parts of the puzzle over time as I grew up. At the point of diagnosis and intervention, I could not have spoken up for myself. But with the gift of hindsight, this is what I wish I could have said.

Dear Parents,

While it will hurt that you cannot intervene, please don’t try to fix me.

I know you wish I could run faster, draw pictures with a higher level of technical skill, and walk with my feet flat on the ground instead of tipping my toes. I wish I could do all these things, too.

But if you choose to try to fix me, through numerous extra operations, various physical therapies, essential oil rubs and even trying a diet-based intervention measure, you’ll be attempting the impossible. At present, hydrocephalus is treatable; that’s why you opted for the shunt. That gives me a chance to live as a regular mainstream child. Thank you. But it is not curable – this means your various intervention measures will be implemented in vain, and you will be disappointed when you realize this.

So don’t try to fix me! Instead, love me as any other parent would love their child.

Be honest with me about the details of my condition in an age-appropriate manner.

As I grow up, I will gradually realize that part of me is different from other kids. Yes, I know all of us are different in our own respective ways, but mine’s a little more noticeable when people observe me enough.

I note your good intentions by not telling me that I am different – perhaps it’s the fear that I would place a stigma on myself that you are guarding against. Or perhaps you are refraining from “labeling” me before society does.

But the difference between me and others’ conditions is this – they might have totally visible conditions, like cancer which usually manifests in hair loss, or a broken leg, validated by a cast. The visible nature of the condition leads people to have a degree of understanding. It is easier to understand and empathize with things we can see.

While I hope every day that my differences which are hidden on first sight might not be picked up, I still need to be prepared to handle the occasion if they do. I know you’re afraid I wouldn’t understand – and you’re right, because it will take time. Having said that, my peers will probably understand as little (or as much) as I do – that’s why we need to put this into age-appropriate vocabulary.

Please help me to help myself!

I’m giving you the benefit of the doubt that you don’t know how to explain such a complex condition to me, which is OK – not many people do. But that’s why we need to ask for help from others, or rely on our own creativity.

I wouldn’t limit your sources of help or your creativity, but I suggest something like this:

Tell me how when I was born there was too much water (cerebrospinal fluid) in my brain, like a cup filled with water that is about to overflow. Because it is trying so hard not to overflow, and my brain is trying to keep it all in, it hurts my brain. That’s why we need to help remove the water. If we have an overflowing cup, we drink the water. In this case, we put in a straw (shunt) so that it can divert the water (cerebrospinal fluid) out of the overflowing cup (my brain) into other spaces.






Hydrocephalus is a condition caused by too much cerebrospinal fluid (CSF) inside the ventricles of your brain. Ventricles are spaces inside the brain where cerebrospinal fluid (CSF) is produced. CSF surrounds your brain and spinal cord. CSF is constantly being made and absorbed by your body. It moves through ventricles before it drains out and gets absorbed into your bloodstream. When CSF cannot drain properly, the fluid pressure may cause the ventricles to swell.


What are the most common types of hydrocephalus in adults?

  • Communicating hydrocephalus: This occurs when CSF leaves the ventricles but cannot drain and be absorbed by the bloodstream.
  • Noncommunicating hydrocephalus: This is also called obstructive hydrocephalus. It occurs when the flow of CSF between the ventricles is blocked.
  • Idiopathic normal pressure hydrocephalus: This occurs when the ventricles swell for no known reason. It is more common in people aged 60 or older.
  • Ex-vacuo hydrocephalus: This can occur after an injury to the brain, such as a stroke or trauma. The injury may cause the brain tissue to shrink.

What increases my risk of hydrocephalus?

You may have been born with hydrocephalus. The following can also increase your risk:

  • A brain injury or bleeding inside your skull
  • Infections, such as meningitis (infected covering of the brain or spinal cord) or ventriculitis (infected ventricles)
  • Tumors or cysts that block the flow of CSF
  • Aqueductal stenosis (narrowed passage between 2 ventricles), a condition you are born with that increases your risk as an adult

What are the signs and symptoms of hydrocephalus?

Signs and symptoms may be mild at first and get worse over time:

  • Headache or dizziness
  • Nausea or vomiting
  • Double vision
  • Urinary problems, such as needing to urinate often or urgently, or leaking urine
  • Sleepiness or fatigue
  • Seizures or loss of consciousness
  • Problems walking
  • Thinking or memory problems

How is hydrocephalus diagnosed?

Hydrocephalus can look like many other medical problems, so tests are needed to confirm a diagnosis:

  • Blood tests: You may need blood taken to check for infections. You may need to have blood drawn more than once.
  • MRI: This scan uses powerful magnets and a computer to take pictures of your brain. An MRI may show aqueductal stenosis, tumors, or cysts. You may be given dye to help the pictures show up better. Tell the caregiver if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the caregiver if you have any metal in or on your body.
  • CT scan: This test is also called a CAT scan. An x-ray machine uses a computer to take pictures of your brain ventricles and to check for bleeding or excess fluid. You may be given a dye before the pictures are taken to help caregivers see the pictures better. Tell the caregiver if you have ever had an allergic reaction to contrast dye.
  • Lumbar puncture: This may also be called a spinal tap. Caregivers put a needle into your back to collect CSF from around your spine. The CSF may be tested for infection. Caregivers also may check the CSF pressure.
  • Lumbar drainage: Caregivers use a needle to insert a catheter (tube) to drain CSF from around your spine for up to 5 days. This test is done to see if surgery to drain CSF fluid would relieve your signs and symptoms. You must stay in the hospital during this test.
  • Intracranial pressure monitoring: This is also called ICP monitoring. A small tube is put through your skull. The other end is connected to a monitor. Caregivers use ICP monitoring to keep an ongoing measurement of the pressure inside your skull.
  • Cisternography: Caregivers inject a tracer (radioactive substance) around your spine to watch how CSF moves through your brain and spinal canal for 1 to 3 days.

How is hydrocephalus treated?

You may need long-term treatment to keep your symptoms from coming back.

  • Surgery:
    • Shunt placement: A catheter (shunt) is placed inside a brain ventricle or around your spine to drain CSF. A plastic tube is attached to the catheter. The tube drains into your chest or abdomen, where your body absorbs the excess CSF. A valve on the tube helps slow down or speed up the CSF drainage. The shunt valve may need to be adjusted to maintain the proper amount of CSF drainage.
    • Ventriculostomy: This is also called endoscopic third ventriculostomy, or ETV. Your caregiver uses a tool called an endoscope to look into the brain and ventricles. An endoscope is a thin, flexible tube with a camera at the end. Caregivers make a small hole in a ventricle to allow the CSF to drain and be absorbed by the body.
    • Tumor or cyst removal: Your caregiver may remove a cyst or tumor from your brain to relieve a blockage.
  • Medicines: You may need antibiotics to treat an infection. Steroids or other medicines can help lower the amount of CSF your body makes.

What are the risks of hydrocephalus?

  • After a shunt placement, the shunt valve may need adjustments if there are any problems. Headaches and other hydrocephalus symptoms may return. You may feel sleepy or confused. You may not be able to move one side of your body. Tell your caregivers about any of these symptoms right away so they can adjust your shunt valve and check for other problems. Your shunt can also become blocked or stop working. You will need another surgery to fix a blocked shunt. You may also be at risk for an infection after surgery, which can be life-threatening.
  • Without treatment, symptoms such as headaches, vision problems, or seizures may become worse. You may develop incontinence (leaking urine). Your ability to think clearly may get worse. Over time, the pressure on your brain caused by hydrocephalus may be life-threatening.

How do I manage hydrocephalus?

  • Keep your follow-up visits: Ask your caregiver when to return for follow-up visits. You may need CT scans before shunt adjustments every 2 to 3 weeks at first. Write down your questions so you remember to ask them during your visits.
  • Keep a headache diary: If your headaches get worse during treatment, your caregivers may suggest you keep a headache diary. Rate your headache, such as from mild to severe. Write down what you were doing when the headache started. Also note when you have been sitting or standing for a long time. Caregivers may use the headache diary to change your treatment if needed.



6 Things I Wish I Could Have Told My Mom the Day I Was Born With Hydrocephalus and Goldenhar Syndrome

The author and her Mom.

It’s only been a few hours after my birth. I know you are tired in a wakeful sort of way after over 12 hours of labor. The doctors “didn’t know” my skull would be so swollen with fluid because of hydrocephalus. You knew from your mother’s instinct listening to your own body — but they didn’t pay attention.

I know your body hurts from that long labor and it’s hard to get comfortable. The doctors have done everything and nothing trying to figure this “surprise.” They’re telling you everything now as they educate themselves on my disability. Now they talk to you as though you could understand their lingo. They throw out diagnoses and symptoms like “Goldenhar syndrome,” and “hemifacial macrosomia.” These words confuse you with worry because they tell you nothing useful to you as a mom getting to know her child.

Someone—not a doctor—steps into your room as Dad is sitting with you and gives you the first news you can understand. “You don’t have to keep her. You can place her in an institution.” Those words jolted you out of the numbness that was settling over you as you replied, “She’s not a dress we can return to the
store. She is our daughter. We will do what needs to be done.” And so you did.

Some 40 years after the fact, and having heard that and many stories about the first few years of my life, there are a few things I wish I could have said to you then. Some of them you instinctively knew; some we learned together.

1. Doctors can guide us, but they can’t dictate my future.
I know you don’t know what my future will be like at this point. I know you can’t anticipate anything. But neither can I. Then and now I can only know what I know today. Having met few people with Goldenhar and hydrocephalus, I have little to compare my life to. All I know is today I’m fine — and that’s important to hope for in those first few days, even as you are concerned for my future.

2. Don’t forget my “real life.” I know you want to fix everything, out of concern for the physical, social and emotional ramifications of my disability. But I can’t wait to start living after all the medical procedures are completed. I can’t wait for my doctors to get it right. Laugh with me, enjoy the family, and enjoy yourself. Enjoying the time away from my disability is essential to helping me, I promise. I need to be the kid I am, not a walking medical condition.

3. Accept me as I am.
I was your fifth child. You expected that raising me would be a cakewalk. Instead you will find many things to be different, not just my disability and the procedures and apparatus associated with it. I learn and respond to things differently. You will be surprised by my reactions. My disability will shape how I see things, approach them and react. Listen to me and be open to learning new things with me.

4. I know you worry about other people trying to marginalize me. You can help by reminding me how wrong they are. Remind me that I am smart, kind and capable of anything I want to do. Remind me it’s OK to be different but equal. I’m going to need those reminders. With your support, I will be able to stand up to them and for myself.

5. I love you, and I am grateful for how my life turned out thanks to you. Everything you will do, you will do with my well-being in mind. I may not agree with it at times, because I have a different perspective as the one born with a disability. But I don’t regret a thing. Without the successes and failures and detours we experienced together, I would not be who I am today — and today I’m OK.

6. I am sorry for your worry in the beginning. I worry for you because you never asked for this. You know how things could be different for me without this, and that causes you grief even as you do everything you can to be positive and help me. I hope you see what I see — it was worth it in the end.