Hydrocephalus : Being pregnant and having brain surgery

Hydrocephalus : Being pregnant and having brain surgery

When I was diagnosed with Hydrocephalus, my husband and I had a pre-op consult with the surgeon, who discussed my upcoming shunt surgery.  We talked about what to expect before, during and after the operation.  More importantly, we told him that we were planning on having another baby and questioned whether this would be a possibility.  He said it would and in these situations, they would just give a bit of slack on the tubing to accommodate the growing baby.  I felt confident that all would be well…

When I started having problems with my shunt after the first year, I was beside myself and totally confused.  He never explained the possibility of the shunt failing and was of the opinion that everything was fine since I went back to him numerous times.  Also, being new to the condition, I didn’t know any better either.  I let it go but couldn’t ignore feeling constant nausea, vomiting and headaches.  I did a few pregnancy tests over the next couple of months because it was either that or the shunt.  When I eventually got a positive result from one of the tests, I was both excited and scared at the same time.  I realised that the similarities in symptoms were just too close and would require extra vigilance from me.

Since I had no joy with this surgeon in acknowledging that there actually was something wrong with the shunt, I travelled to another city, 8 hours away, to get help.  I was 5 and a half months pregnant at the time.

My consultation, from my perspective at least, was simply to establish if there was a problem.  Beyond that, I simply did not allow myself to think.  The next surgeon advised that it might be a good idea to have the baby first and then explore the problems with the shunt.  However, he suggested doing a lumbar puncture to ascertain my pressure in order to have a reference point and just to play it safe.  He said he would discuss my case with some of his colleagues such as a paediatrician, anaesthetist and neurologist.  We agreed to do the lumbar puncture the next day.

I was admitted to a room all by myself where I lay waiting for him.  The LP itself was something I’ll remember for a long time to come.  He tried more than 5 times, after hitting a nerve,  causing me to literally lift off the bed, and promising that this would be the last time.  My growing belly made it a bit awkward to lie in the foetal position required to do this test successfully.  In the end, he got the needle in the right spot and was able to get the result he was after.  He apologised for the umpteenth time for causing me such pain and discomfort and left the room saying he’d be back.  I lie waiting and “licking my wounds” after the ordeal, not really knowing what to think or expect.  When he eventually returned a few hours later, he told me that the pressure was high and that he would need to operate as soon as possible.  He’d discussed it with his colleagues and they were all in agreement.

I felt deflated and yet relieved that someone had taken the time to listen and take me seriously.  From that moment I think I went on autopilot.  It was a Friday so he told me to take the weekend and get myself organised, ready for check in early the following Monday morning.  I remember praying from the time the surgeon left my room and various times before that Monday morning, for a positive outcome.  Little did I know, I would be having 3 brain operations over the next 3 days…

You can read the rest of my story here.

If you are facing this situation right now, I’m here to tell you that you can get through it.  Sure, there are situations during surgery when complications arise.  However, the one thing that pulled me through that (when I eventually regained consciousness), was the sound of my baby’s heartbeat on the foetal monitor.  Every day, someone from the neonatal ward would visit my bedside and strap a monitor around my belly, checking to see that everything was fine.  I fully believe it was the sound of my baby’s heartbeat and the realisation that I needed to fight, be strong and pull through for her, that eventually helped me regain my strength and make it through.  

Babies are resilient…all children are.  You only need to look at the ones who have had shunt surgery themselves just a short while after birth to know that.  We shouldn’t question…but yet we do.  We shouldn’t worry…but yet we do.  These are all normal reactions especially during a time when you are faced with so much uncertainty and fear.

I believe that in situations like these, the doctors take all kinds of precautions to ensure the well-being of both mother and child.  It’s not exactly a decision you can make to say “I’ll wait until I give birth…” because waiting could very well mean a negative outcome for you and also your baby.  Admittedly, it’s not an easy decision, to begin with.

I look at my daughter, turning 7 next month, and am thankful that we both survived that time.  I am especially thankful to her for pulling me through.  She came through it all right and there were no side effects.  Though compared to my boys, she slept more than both of them.  The boys were early risers and would normally be awake from 6/7am.  However, my daughter, especially up to the age of 3, would easily sleep until 11am/12pm every day.  In fact, she still sleeps late now, if given the chance.

I often wonder if her sleeping late is possibly because of me having been through the 3 surgeries, anaesthesia and then comatose for a week before regaining consciousness.  I suppose it isn’t the worst thing that could’ve happened, especially not for a tired mother.

Never underestimate the fighting spirit of a mother who will defy the odds to protect her young nor should you question the powerful bond between a mother and her unborn child.

I have faith that you will get through this too…both of you.


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