Hydrocephalus Diagnosis

I am going to apologize in advance for how long this post will be. I hope that if you are reading this you don’t give up and read it all. Maybe you have gone through this or something similar, or maybe you know this is in your near future and want to know you are not alone. Either way, this is the story of one of the hardest times of my life.

I think in the back of my mind I knew something wasn’t right. I didn’t want to admit it though. After everything we had already been through I couldn’t admit that anything else could happen to my sweet baby boy. It took someone speaking up and telling me it was possible that Jax had Hydrocephalus. I had never heard the term before but after doing my own research I knew it was possible. My thoughts in the back of my mind of his head being too big were shared by others. Someone finally had the guts to come forward and I truly appreciate it. After realizing the possibility based on researching Hydrocephalus I spoke to my husband then called his pediatrician. They scheduled an appointment for that afternoon. It was a Monday; I remember it all too clearly. They measured his head and based on the growth since his last appointment it had increased significantly. They called the local children’s hospital and let them know we were going to be headed over.

The children’s hospital is right across the street from the hospital where Jax was born and spent time in the NICU. The drive there was a gloomy reminder of the drives to visit him in the NICU.

Once we arrivedroom in the E.R. diagnosisHydrocephalus.a room on another floor. This is where we would end up spending the next few nights. He had to begin to fast after midnight so he could have an MRI the following day to determine the best way to proceed.

A neurosurgeon came in to discuss the possible options. He said based on the MRI shows he might have the option to have an ETV or have a shunt placed. The ETV was a possibility of being an option, if the MRI showed this option isn’t possible our only choice was a shunt. We as parents had to decide if the ETV was possible if we would want to try or not. The neurosurgeon said most doctors won’t perform an ETV under a year old but he was an aggressive doctor and if that is an option to avoid a shunt he would do it if we chose. I don’t remember at what point he said it, but the one quote that I remember him say is “a shunt is a mechanical device, it’s not a matter of if it will fail but when”. After lots of research on our phones and talking we decided if the ETV was possible that’s the route we wanted to take.

I understand having to fast to be put under, I get it. What killed me while fasting was my poor baby boy didn’t understand. He had no idea why no matter how much he cried I would not feed him, no matter how much he tried to tell us he was hungry we wouldn’t feed him. We had no idea when he would be scheduled for his MRI and we wouldn’t know until 7am. It was after 7am and we still hadn’t heard, he is miserable, we are miserable not being able to feed him knowing he can’t understand what’s going on. They finally let us know he was scheduled for 12:30 but still had to fast in case he got bumped up sooner. That’s over 12 hours they asked my just shy of 6 months old baby boy to fast. Even longer if you then add the time for the MRI, waking up and being able to nurse again. This was one of the hardest things for me to go through as a mom. That Tuesday was one of many tough days that week.

At some point while waiting the neurosurgeon came in to check on us and we talked to him about having a extremely hungry baby waiting on the MRI. He said he would try and get him bumped up in the schedule if possible.

It felt impossible at the time, but we survived and made it to the MRI. Waiting to find out the results was nerve racking. The neurosurgeon came to speak with us, an ETV wasn’t an option and he would be getting a shunt. The MRI showed some droplets of blood in the brain, apparently an IVH, intraventricular hemorrhage, occurs in some preemies. I read that babies born before 30 weeks typically have an ultrasound of the head to screen for IVH, where babies born between 30 and 34 weeks only have an ultrasound if they show symptoms of IVH. Our little guy was born at 34+4 weighing 6lbs even. He had no symptoms so never had a head ultrasound. The neurosurgeon believes this is what led to his Hydrocephalus.

The neurosurgeon was nice enough to hold off and schedule his surgery for Friday. With it being Tuesday afternoon, if it got scheduled for Wednesday or Thursday he wouldn’t be scheduled until later in the day and having to fast starting at midnight we were glad the neurosurgeon was considering that. He was scheduled for first thing Friday morning with surgery at 8. He was taken to pre-op at 7. Leaving that hospital room, knowing he was going for brain surgery was hard. Trying to hold it together was impossible. Having our parents there was nice but I didn’t feel the comfort of them being there at that point. I felt like my husband was the only one who could understand what I was feeling, and to be honest I didn’t feel like he could truly feel what I did. I was heartbroken my baby boy was fixing to have brain surgery. Part of me felt like I’m the reason. My preeclampsia led to him being premature which led to the slight brain hemorrhage which led to Hydrocephalus. I felt somewhat responsible, if I hadn’t developed severe preeclampsia and had to be induced would this have happened?

I tried not to think about the upcoming surgery, but brain surgery isn’t something you can just forget about. I was grateful for him being able to have surgery first thing in the morning so fasting for a shorter period of time, but it also extended our hospital stay. I was ready to sleep in my own bed again, but refused to not be there through the night for my baby. He would not be left alone in the hospital, and if he had to sleep there all night I would too. I left once with my husband to go home, use a full sized shower and repack for a few more days. Grandparents stayed at the hospital so he wasn’t alone.

Surgery morning had come, my baby boy only 6 months old was fixing to have brain surgery. I’ve had almost a week to process this yet it still seems surreal. Just a nightmare I need to wake up from. I was doing fairly good holding it all in, all it took was someone else to cry and I couldn’t keep it in. I told myself I wouldn’t cry until he was away from me in surgery, I had to stay strong for him. I couldn’t stay strong, I cried, I still tried to hold back the tears and keep them as minimal as possible. This would all be over soon.

While in the pre-op room we were told about an app called EASE we could download on our phone to be able to receive messages about how surgery was going. It helped ease the worry a little knowing we could at least know what was going on during instead of waiting until it was over. Once he was taken to surgery we still decided to go walk and ended up buying a fidget toy and a puzzle to try and help keep our minds off surgery. They didn’t help much, but once we got the first message he was safely asleep and they were fixing to begin surgery it helped to be kept in the loop. We received a couple of messages including one saying surgery went well and the final one included a picture of him sleeping saying he was out of the surgery room waiting to wake up from the anesthesia. That picture helped so much to know that brain surgery was over and he was sleeping peacefully.

He had a little trouble nursing at first due to the anesthesia but other than that he did amazing. He was tougher than I was, and recovery was quicker than I expected. By Sunday evening we were able to go home. Only a few days after brain surgery he was able to go home, can you believe it?

I will go ahead and end this post here, I’m sure it’s plenty long enough. I will save the after care and everything else for another time. I do want to thank you for taking the time to read my story, his story. This is something that was not easy to go through then or bring back every single memory of it now but I needed to get this out. Thank you for reading and I hope that if you’re going through something similar now you know you are not alone.

4 thoughts on “Hydrocephalus Diagnosis

  1. Wow! As a mother I don’t envy any parent of a child with this condition. I can only imagine what you must have gone through.
    This is not an easy condition so I commend you on getting all that out. Your son is lucky to have you as I have no doubt you’ll be an awesome advocate for him. I wish you all well on this journey and welcome you to the Hydro family💙

    Liked by 1 person

  2. I has a shunt placed in when I was 14 years old due to a brain tumour. And as horrible as the prospect of a shunt sounds, I’m more than certain Jax will live a completely full and happy life. I hope that your little one is doing well. I am now 21 and haven’t had to have any revisions of my shunt yet. I’ve just started blogging about my journey, some days are good, some bad, but family support is the best thing you can get.

    Wishing you all the luck going into the future Xxx

    Liked by 1 person

    1. Thank you! It has been 6 months and so far no issues other than some slight delays in milestones but he is catching up fast. That’s awesome news to hear you haven’t had any revisions! I hope you don’t have to have any at all. It’s so nice to hear from other people and read other stories to relate to.

      Liked by 1 person

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