Seth and I have been reminiscing this trip on how hydrocephalus was the first indicator we had that something was going on with Jack. It was on an ultrasound when I was 30 weeks pregnant. They were doing the ultrasound per my request as we entered the third trimester. I wanted to check the blood flow and the cord since I have a blot clotting factor that makes my pregnancies slight high risk. We had no idea anything was wrong at that point. The ultrasound tech got very quiet, left the room to make a phone call. I knew something was wrong.

Even before he was born we were meeting with neurosurgeons discussing how remarkable the human brain is and how Jack is fearfully and wonderfully made… (my words not the surgeons – haha)

We met with a new one yesterday. We liked him instantly as he offered to help push our stroller to his office while our hands were full. Our normal neurosurgeon is at a conference right now. But he has consulted with this new guy over the year. Our new guy is Dr. Warf. He is the hydrocephalus guy, where Dr. Proctor does more on the craniofacial side of things. So either way, we are in very good hands.

Dr. Warf has a very interesting and noteworthy background. in the early 2000’s he and his family sold all they had, moved to Uganda to start a missionary hospital with a focus on neurology. They lived there 6 years and he said, “We saw a tsunami of patients with hydrocephalus come through our doors.” With the high birth rate, and high infection rate there were several kids that needed surgery. At that time, a shunt was (and still is in many cases) the route you would take to relieve the pressure on the brain. Dr. Warf and his colleagues began to feel however, that they were “replacing one disease with another – shunt dependence”. You see, shunts are not bad for those that need them. They do however, create a reliance on the shunt. So, once they are in they cannot be removed… and over the course of the child’s life will need more surgery due to failure or infection which could lead to death. Dr. Warf took two older ideas and combined them to create a new technique that would allow for some of these children to not need a shunt at all. He has received a genius grant on these concepts and is currently training physicians around north america in this. To train them, he takes them to Uganda for 2 weeks where they do about 20 surgeries a week!  To date, Dr Warf has done over 3,000 of these surgeries. Click here for more details.

Whew… So where is Jack in all of this?

His hydrocephalus has grown from moderate to quite severe in the past three months. His head circumference is off the charts (as we all knew). What I didn’t know was that the ventricles had gotten so large that the fluid has started to seep into his brain tissue. Basically, his brain is a sponge and has soaked up all the water it can. His skull has actually popped out where the incision was made because there was too much fluid.

The catch? It’s NOT his Apert Syndrome!  Kids with apert syndrome very rarely have true hydrocephalus, though they do have enlarged ventricles they do not keep growing the way that Jacks has.

This is where the conversation brought us back to the early days… the most likely cause (though these doctors are conservative with causal language) is his dandy walker variant.

What is dandy walker? good question…

In my understanding… Dandy walker is a spectrum of disorders where there is a collection of fluid in the back of the brain (the fourth ventricle) causing the cerebellum to be splayed or split. Jack does not have the true malformation (dandy walker is also genetic – not related to apert) but a variant. This means that he has a collection of fluid pressing on the cerebellum, but the two sides are still connected (a good thing!) The cerebellum is the part of the brain that controls your gross motor skills so this may be a large contributor to Jack’s development delay as well. All in all, Jack has been doing GREAT – all things considered.

What’s happening today?

Jack is in surgery right now!  The procedure has two parts. The first is creating a small hole in the base of the third ventricle to allow more fluid to drain out of his brain and into his body. This alone would not make much of a difference as there is so much fluid. Therefore, he will also go in with a 1mm scope to cauterize some of the structures that making the fluid causing them to shrink in size, allowing Jacks body the time to recover and hopefully alleviate the need for a shunt at all! We’ll see though…

We will then stay in the hospital for three days and in Boston for 2 weeks for observation. This surgery will immediately relieve the pressure on his brain. Will it be enough?  Only time will tell. Most of the time if this surgery will fail, it will be in the first month. So… we wait. In two weeks we will have a head ultrasound to check the fluid. At that time if it has not changed at all, we will proceed to place a shunt. If it has gone down we will wait. After 6 months, we should be able to get the all clear and will not need a shunt!  The success rate is about 50%. Because of Jack’s apert syndrome, Dr Warf is a little unsure how he will respond.

How are we?

We’re good. Better than we deserve…. We had a great day yesterday walking through Boston and just enjoying each other. It has been a whirlwind of a week!  We have so much peace that we are here and the right person is working on Jack this morning. Thank you so much for your prayers, texts, and everything. I read every comment on facebook and it is so encouraging that you all are right there with us!

We’ll keep you updated 🙂






8 thoughts on “Hydrocephalus”

  1. Thank you for the update, Shannin. I am praying for the present needs, and praising God for so wonderfully providing just the perfect doctor for Jack, for this surgery. Your boy is in good hands, in every way. 🙂

  2. Thank you so much Shannin for taking the time to explain things to all of us. you do a great job relaying the information so we can understand jack’s medical journey better. you are a truly remarkable family and it is a privilege to know and pray with you. much love to you all

  3. So glad to hear you are well and at peace. We are all thinking of Jack, you and your family. Jack is so very lucky to have you as his Mommy:)

  4. God’s blessings on you guys as you wait this week for the next surgery. hadn’t read specifically on here in a while and had been praying, wondering when his next surgery was – lo and behold – one was being done while I was praying! He is such a precious child – my heart aches for all he has to go through, and you guys, too, as the parents. Long journeys, but praying that somehow God will continue to give you joy in the journey. Will be praying this week and esp on Friday. . . God bless. Camille 🙂

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