Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

For those who don’t know, my daughter Little Miss Minion was born at 28 weeks. While in the NICU, she developed an infection that led to meningitis and sepsis. As a result of the meningitis, she developed a condition called hydrocephalus.

Several weeks after she was out of the woods from her infection and complications, I remember getting a message from the charge nurse one day when I was at work that said they had done a scan (they did brain scans periodically to make sure she didn’t have a brain bleed, another complication of premature birth) and the scan had revealed enlarged ventricles. Of course, I immediately googled enlarged ventricles and found articles about kids dying in Africa with heads the size of watermelons. Needless to say, I hightailed it to the NICU to find out what was going on with my baby. They told us that a specialist was coming to talk to us about our options. I was convinced that there was a strong chance that LMM would end up like those kids in Africa.

The specialist they sent turned out to be an incredibly talented neurosurgeon from a nearby Children’s Hospital. There aren’t many pediatric neurosurgeons in the country, and there were none in the medical system we used. That’s a story for a different day.

The neurosurgeon explained that LMM had something called hydrocephalus. He told us that, because of the illnesses she had overcome, her brain had become damaged and was no longer draining itself the way it should. He told us about cerebrospinal fluid and how your brain creates this liquid inside areas called ventricles. How something happened inside LMM’s brain and the liquid wasn’t draining. Instead of flowing around her brain and being reabsorbed, it was pooling and building up, putting pressure on her brain.

As if this wasn’t bad enough, he went on to explain that the only way to fix this problem was to surgically implant a device called a shunt. There would be a small tube placed inside one of her ventricles that would drain the extra fluid into a pocket near her stomach, where it would be reabsorbed.

Her first shunt surgery took place when she was about eight weeks old and weighed around 4 pounds. Since then, she’s had four more surgeries.

The only experience I had with hydrocephalus was watching a Disney Channel movie starring Frankie Muniz called Miracle in Lane Two. It’s about a kid who wants to race these Build It Yourself race cars. The kid has spina bifida, and uses a wheelchair to get around. He also has hydrocephalus, and has a shunt malfunction during the plot of the movie. Having this as my baseline knowledge, combined with the terms “brain damage” and “brain surgery” plus the fact that no one could tell us what this diagnosis meant for LMM, we were incredibly worried for her.

Luckily, the brain damage was minimal (as seen on multiple MRIs) and it appears that her brain simply went around those areas to make new connections. We won’t know for sure, so we just have to wait and see if she starts having trouble later.

If you’ve stumbled on this blog by searching hydrocephalus, I want to tell you that you aren’t alone. Also, don’t google it. 🙂

Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital. 

First Surgery

This has been a rough week for LIttle Miss Minion. Its been a rough week for Mr Minion and I as well.

On Tuesday, LMM had a regularly scheduled ultrasound of her head to make sure that her brain was developing normally. I got a call at work from the nurse practitioner, telling me that they had found enlarged ventricles in her brain. I asked what that meant and she said that the ventricles in her brain were bigger than they should be. No shit. After Googling “enlarged ventricles,” I was in full panic mode. I texted Mr Minion, who left work early to meet with the fleet of doctors I had been told would be convening in her room that afternoon.

When LMM was about a month old, she developed Group B Strep, which turned into sepsis, which (probably) turned into meningitis (brain inflammation). The meningitis might have caused a blockage that caused fluid to build up in her brain. This is called hydrocephalus, or “water on the brain.”

The neurosurgeon explained that the brain floats in a liquid called cerebrospinal fluid (CSF). CSF is basically Gatorade for your brain, containing water, electrolytes, sugars, etc. This fluid is created within the ventricles of your brain and is normally absorbed after flowing through the brain itself. In LMM’s case, this absorption is not happening. There is a blockage between the 3rd ventricle (in the center of the brain) and the 4th ventricle (toward the back of the neck). This blockage is damming up the fluid being created within the 3rd ventricle, putting pressure on the brain and pressing on the skull.

Luckily, since LMM is a baby, her skull is not fused together yet. The plates can spread apart to accomodate the increased pressure being put on it from the increase in fluid. In order to keep the fluid from building up and putting too much pressure on the brain, a procedure is needed to ensure that the fluid can drain properly. On Thursday, LMM had a VP (ventriculo-peritoneal) shunt placed inside her brain to drain the extra fluid into her peritoneal cavity, a space near her stomach, where it can be absorbed. Initital ultrasounds and scans confirm placement of the shunt and show that the fluid levels are going down.

What does all of this mean???

According to her pediatric neurologist, LMM has a small chance of physical delays in fine and gross motor skills. Fine motor skills are things like writing or handling things with fingers. Gross motor skills are things that use large muscles, like walking or swinging arms. She also has a slightly increased chance of seizures. On the other end of the spectrum, she could be completely fine. Time will tell. Babies have incredibly plastic brains and its possible for them to rewire around damaged portions, which would result in no visible problems. She might have slight delays in speech development or a learning disability.

According to her neurosurgeon, the shunt will drain excess fluid from her brain, preventing damage from occuring to her brain tissue. She will need shunt revision surgery periodically to lengthen the shunt or to correct it if there is a malfunction within the mechanism. He is very unwilling to guess on how this will affect her in the future and has repeatedly told us that the baby brain tissue is very resilient.

According to her nurses and her doctors, LMM is very lucky to have Mr Minion and I as parents because they know that we will do everything possible to give her every advantage we can.

It will be nearly impossible to tell if any future problems are caused by the enlarged ventricles. Preemies are at risk for nearly all of the same things that the enlarged ventricles could cause. In either case, therapies will assist her to reach her full potential. Due to her early gestational age at birth (28 weeks 0 days), she qualifies for physical therapists already. They do visits a couple of times a week to see how her muscles are developing and to make sure her movements are good. Occupational therapists also make weekly visits, currently focusing on improving her eating skills. She is enrolled in the follow up program since she was so early and small, so this will provide assistance after she leaves the NICU.

Her surgery was Thursday. Since they put her under general anesthesia, she needed to be put on a ventilator (vent). This is a breathing machine that essentially breathes for her while she is under and while she comes out of the medication that puts her to sleep. It took her until Friday morning to really come out of the anesthesia and to be extubated (have the vent removed). It takes a long time for Preemies to come out of it because they metabolize the medication so much slower than adults or even full term babies. Mr Minion and I stayed at the hospital Wednesday and Thursday nights. I got about 8 hours of sleep between the two nights. Thursday night, I spent most of the night standing next to her crib, holding her hand and trying to comfort her. She was coming out of the anesthesia very slowly and opening her eyes. Due to the placement of her vent, I couldn’t sit in the recliner and see her, so I stood on the other side so that she would see me when she opened her eyes. I slept from about 1am until 4:30am.

On Friday, she had a slow, relaxing day. She slept for most of it, ate an entire bottle for the first time, promptly threw half of it up, and slept some more. Saturday, she had some drainage coming from one of her ears and a slightl fever, and the doctors wanted to rule out an infection, so they started antibiotics, blood cultures, fluids, and an IV. Normally, they would just watch the ear, but since she has a shunt, they pulled out all the stops. Her 24 hour cultures came back negative today, and if they come back negative tomorrow, they will assume there is no infection and can discontinue all the medications and the IV. She was very, very fussy yesterday and the nurses said she was probably upset about the antibiotics. They can cause stomach aches and cramps, plus diarhea. Her nurse gave LMM some Tylenol, which really helped.

Today, her hematocrit levels came back low, which means that she is anemic, and that she needs another blood transfusion. She has had several so far, and Mr Minion and I were discussing how blood transfusions seem normal for us. Babies are unable to make their own hematocrit until around 38 or 39 weeks gestation and usually need transfusions every few weeks. LMM was unique in that she didn’t need one for several weeks after birth. Normally, they need one almost immediately. I held her hand and did a touch hold while they tried to get a good IV stick after her first one started leaking, but they couldn’t find a vein that hadn’t already been used. Babies’s veins don’t heal as quickly as adults, so once they are stuck, the veins take a long time to be usable again. They tried several times before deciding that she had taken enough tries. I’ve been dubbed “Nerves of Steel” by the nurses because I stayed with her the whole time. I figure if I can help her to be more comfortable, I should stay with her.

All in all, its been a long, exhausting week for the Minion family. Little Miss Minion is doing very well and was back to her old self today. Its amazing how quickly they can bounce back from things.