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Bee-ography: Hydrocephalus Awareness

Posted Sep 03 2012 8:56pm
From bee-mommy, Katie, an experience faced by many of our parents to little ones living with a primary diagnosis of hydranencephaly (the oftentimes associated diagnosis of hydrocephalus):

When our little Johnny was just nine days old, doctors showed concern over the size of his head. Measuring in the 100th percentile, we knew something was going on in this little baby’s body that wasn’t quite right. After taking scans of his head and getting a MRI of his brain, he was diagnosed with hydranencephaly and hydrocephalus. Both of the diagnoses were a shock to us. He seemed so perfect, how could it be? 

We stayed with him in the PICU for almost a week. We learned more about his conditions and what to expect. His head was measured every morning and was staying at 42 cm. Since we had originally been being seen for a separate heart condition, we put off placing a shunt since his head size seemed stable. 

We left the PICU for the comfort of our home with more medical equipment and knowledge than we ever desired for our newborn. The compassionate doctors and nurses had informed us that Johnny would likely be a very irritable baby because that was common with his condition. It was hard to believe that the baby that ate and slept so well was going to become fussy and irritable. We left with a refreshed lesson on CPR and measuring tape to closely monitor his head. 

Returning home was not much different than before. Our home health nurse would visit a little more frequently, and Johnny’s head size remained stable for weeks. We enjoyed every minute with him. Reading up on hydranencephaly we kept seeing the terms “excessive irritability” or something similar. We knew no different. Johnny wanted what he wanted when he wanted it, but it just seemed normal for a baby to cry and fuss. Johnny preferred to be held, and really didn’t like laying flat. Slowly, he grew more irritable, and slowly his head started to grow as well. We contacted the neurologists, and together we decided that placing a VP Shunt would be beneficial for Johnny.
Johnny was about five weeks old when we made the decision to have the shunt placed. The surgery was scheduled for the next week. The weekend felt like an eternity. Johnny’s irritability was at an all-time high. He spent all his time being held, but still fussed and cried the majority of the time. He would calm with white noise, so we often had water running or the TV on a static station with the volume maxed. As his parents, it was heart breaking to know he was so uncomfortable. We wished we had had the shunt place a month earlier when we were in the PICU. 

When the day finally came to have the shunt placed, Johnny’s head had grown approximately 6 centimeters in just over two weeks. Our exhausted family anxiously awaited the surgery that we had hoped and prayed we were going to be able to avoid. To avoid directing us what to do, the neurologist and neurosurgeon had chosen their words so carefully we had no clue if we were making the right decision. We had heard of many risks of shunt infections that lead to having to have another surgery, that we were torn on the choice. Because we were still learning so much about hydranencephaly, we feared we were making Johnny suffer through an unnecessary surgery. We hoped and prayed for a good outcome. Seeing Johnny’s fussiness increase with his head size, we convinced ourselves that the surgery was the right decision.
Shortly after the surgery, we met with the neurosurgeon. He told us that Johnny had done very well during the surgery and that he was in recovery and would be joining us in the PICU room shortly. He explained once more that there were two incision sites that would be covered. One was behind his right ear and the other on his stomach. Johnny was back into the room just moments after we arrived. He was still asleep, and wearing a large hat. He looked so fragile. 

After he woke up, Johnny was noticeably more alert. He wanted to be held and cuddled. We had feared that he was not going to eat as well after the surgery, but he proved us wrong by wanting to nurse right away. His cries proved he was still in pain, but the medicine help. He remained hooked up to an IV overnight, but nursed as well. The next day, his spirits were high and he had plumped up nicely from the extra fluids. He was able to be discharged just two days after having his shunt placed for continued recovery at home. He was a totally different baby. For the first week or so, he still liked extra cuddles, but once the initial pain from the surgery subsided his fussiness did as well. 

As Johnny recovered after the shunt was placed, he head size slowly decreased. Some noticeable ridges formed on his head and his forehead comes to a slight peak, but those are the only negative side effect we’ve had since getting the shunt. The shunt is working well, and there is no question that it is doing its job! At eleven months, Johnny’s head still measures in about the 80th percentile, but without the shunt it would have continued to grow and would still be above the highest curve on the charts. He now even fits into the hats that come with his matching outfits, something that we only dreamed of when he was an infant!
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