This page contains information on what you can expect during the pregnancy and your hospital stay. All babies are their own unique individuals. The information below is based on our own experiences and generalizations based on the stories we have been told. It focuses on issues common to premature babies and the initial shunting and such that is common to most types of hydrocephalus.
What do we expect during the pregnancy?
A big head is not necessarily a bad thing
What do we expect during the delivery?
What is it like in the NICU?
Is it really important that I breastfeed?
What do we expect during the pregnancy?
Hydrocephalus has to be the single most well diagnosed condition with no treatment in the history of medicine. They are going to do ultrasounds every three to four weeks to monitor the progression of the hydrocephalus. By this they mean they are going to see just how big the head is getting to be. The real kicker with these appointments is that no matter how much the head is grown or how disturbing the ultrasound is, they aren't going to do a darn thing about it. If you have one of the types where it could be progressing slowly because of partial drainage, they will use the ultrasounds to determine if they can let the pregnancy go to full term and if they can allow the mother to deliver vaginally. However, if you have a case like ours where it is progressing rapidly and they know early on that they will have to do a c-section and will have to deliver at 36 weeks, then the endless appointments honestly seem like an unnecessary ordeal for no good reason. At one appointment the ultrasound technician thought she saw a blod clot between the ventricles. The doctor later said that he didn't believe that it was an actual clot, but that it didn't matter anyway because they wouldn't have done anything different even if it was. When he he went to make the next appointment we almost told him not to bother if it wasn't going to make any difference in what they did.

Each of the ultrasounds is pretty much another full anatomy scan. They measure the leg bones, the arm bones, the stomach, the kidneys, the bladder and the heart every time to make sure that all of the other growth is on target. They, of course, also take many, many pictures of the brain.

If you have a mild case you probably won't notice in general during the pregnancy. If your baby has a fairly severe case you are in for a fun pregnancy. You're going to get very huge, much earlier than you would with a normal child. Don't plan on doing much past about 30 weeks or so because you aren't going to be able to manuever at all. I'm a fairly small person (OK, I'm really small, I only weighed 100 pounds before the pregnancy and I'm only 5 feet tall) and I ended up in size large maternity clothes and hoped that they would be big enough to last until delivery. Part of the problem is that the baby's head is too big to let them move into the traditional "head down" position. As such he laid sideways across my belly and stayed there. We also had a fairly big boy in there, he weighed 9 pounds 6 ounces at birth - although about 3 pounds of that was due to the size of his head.

As I already mentioned, the doctor will determine if you can try for a normal birth or if you have to have a c-section. Unless you have a really mild case, you will probably need a c-section. The first reason is that in many cases the head is simply too large to fit through the birth canal. The second reason is that a brain that is already under pressure hardly needs to go through the trauma of birth.

The other issue is whether you will have to have a traditional vertical c-section or whether or not you can have the more modern horizontal (also known as transverse or bikini) c-section. In our baby's case his head was already measuring the same as a full term baby's at 28 weeks. Our high risk OB felt that a horizontal incision would not be large enough to accomodate the baby's head, so I had the old fashioned vertical incision. The biggest difference, other than the size of the scar, is that once you have had a vertical incision, all future births absolutely must be by c-section. Honestly, this little fact is the least of your worries and you find yourself trying not to laugh when the OB tries ever so carefully to break the bad news to you. We failed and laughed outright because it seemed so trivial compared to the whole picture.
A big head is not necessarily a bad thing
Now we realize, of course, that is isn't a good thing that the baby's head is getting bigger and bigger and if we had a choice we'd prefer that the baby didn't have the problem at all. Having said that however, we also realize that once you have the diagnosis that isn't really an option. The perinatologist (the high risk pregnancy specialist) who gave us our diagnosis started talking very early on about head size and how it was a really bad sign if it got really big. When we met with the first neurosurgeon he told us that even though the perinatologists and the neonatologists will get really hung up on head size, we shouldn't worry too much about it. This seemed strange to us and he didn't really explain why that was so I don't think we really bought it. Later we met with another perinatologist and he explained why the neurosurgeon was right. We also had two other neurosurgeons tell us later on that the head size growing is actually a good thing in some cases.

In a case where there is a complete or nearly complete blockage so that the fluid has absolutely nowhere to go (as was true in our case) the fluid will continue to be produced and it will continue to build up the pressure in the head. The saving grace for the baby is the fact that the head of a fetus is not one solid piece, it is several plates that do not fuse together completely until they are a couple of years old. This allows the head to expand as the pressure from the fluid builds up. The pressure on the brain tissue is lessened by the expansion of the head. This expansion may or may not be enough to prevent/mitigate brain damage, but it is the best chance the brain has of combating the situation.

Our perinatologist kept telling us that he really hoped that at our next ultrasound that we wouldn't see a lot of expansion, and we prayed for this. Given the fact that we knew very early on, based on an MRI, that there was actually no aqueduct in existence to drain any fluid and there was absolutely no way for it to get better on its own, this was exactly the wrong thing to be praying for. The fact that Owen's head expanded as much as it did is probably why he is doing so well and why his CT scans have shown such good expansion of his brain tissue. The pressure in his head was never really that high.
What do we expect during the delivery?
Of course every delivery is different, but we can tell you what the general procedure seems to be for babies with hydrocephalus. Below is what the plan was, but if you read our story you'll see that things didn't exactly go to plan.

Generally speaking, with moderate to severe cases where there is a concern for damage being done by the pressure, delivery at 36 weeks seems to be the norm. We have met a few people who have delivered as early as 34 weeks, but most neonatologists argue against that due to the problems that can arise from breathing issues. Our son decided for himself that 35 weeks was the right time to be born and he had no breathing issues.

If you are delivering early you start out with an amnio to determine if the lungs are mature enough for the baby to be born. The lungs produce something called surfactant that keeps them from sticking together when the baby breathes. If there is not enough surfactant the lungs will not be able to expand properly. Since the baby "breathes" in the womb by taking amniotic fluid in and out of the lungs, the surfactant ends up in the amniotic fluid and can be measured by amniocentesis. After the fluid is collected it only takes about an hour for the test results to come back, you don't have to wait the days and days for a full genetic test. Provided that the amnio shows mature lungs, the baby is delivered via c-section. There is a reasonable likelyhood of lung maturity at 36 weeks, which is why most neonatologists recommend delivery at 36 weeks. It would seem reasonable to me that you could do the test at 35 weeks though, just in case you were one of the ones where it happens ealier. Some of the doctors that we dealt with were open to this idea and some were not.

Each doctor we talked to had a slightly different plan about the exact timing of the shunting. Our original neurosurgeon said that he would do the shunting within 2 or 3 days of birth. The neurosurgeons at Duke wanted to do the shunting the day after he was born. We also planned to collect as much cord blood as possible at the birth. Then a few hours after the shunting some of the stem cells from the cord blood would be given back to the baby through an IV. Hopefully these will help repair any brain damage that might have been done.

The different doctors we have had have also had different plans for doing brain scans before and after the shunting. Our original doctor said that the first scan (MRI in that case) would be at three months after the birth to see if the brain tissue had expanded. This seemed a bit lax for our taste as we'd like to know if the shunt was actually working a bit earlier than three months after the thing was put in. The neurosurgeon at Duke planned to do a CT scan as soon he was stable after he was born to provide a baseline before the shunting. Then they planned on doing another scan within a day or so after the shunting to see if the shunt was functioning properly. They would do another one at 10 days and then another one at one month to monitor the progress. The scans would continue fairly frequently throughout the first year of his life. We were much more comfortable with this plan.

The other big question we had is how long will the baby be in the hospital. This is another one of those things where you can't know exactly. If the baby has trouble breathing or other complications from being born prematurely then the stay could be extended to deal with those problems. The shunting requires the baby to undergo general anethesia and lasts an hour or so and he/she should recover from that rather quickly. The recovery from that surgery actually is not the thing that determines when he goes home, it's when he can suck, swallow and breathe on his own. Prematurity often causes problems with the feeding, and sometimes the hydrocephalus itself can cause damage which interferes with feeding. The doctors told us to expect one to two weeks in the hospital. In the end our son ended up staying in the hospital for about a month.

If you are lucky enough to live near a hospital that you are happy with, things are much easier. Many times though a local hospital cannot provide the kind of care that a child with hydrocephalus needs. The logistics of delivering several hours away from home can be problematic, especially if you already have children. We already had a four year old daughter and we delivered about 3 hours away from home. She couldn't be there for the birth and Daddy didn't want to miss the birth. So you have to find babysitters for the first few days while the baby stabilizes and you also have to find babysitters while you are going down for appointments. In our case Duke Medical Center was very helpful in putting appointments with the OB and neurosurgeon on the same day so that we only had to go down there once. We are lucky enough to have family nearby our home that can take our daughter for a few days at a time. This is something you need to set up in advance because the upsetting appointments with the doctor giving you bad news, or just lengthy appointments are no place for a young child.
What is it like in NICU?
You will learn many acronyms during this journey and NICU is one that you will hear a lot. It stands for Neonatal Intensive Care Unit. Some hospitals have different names for it, but they all know the term and generally speaking you are looking for a place with a Level III NICU, which means that they can handle just about any breathing issue or other problem that might come up with your baby. If you received your diagnosis early enough in the pregnancy, then you will probably get a tour of the NICU before you deliver. We did and it was a great help. So much happens so quickly after the birth that it's helpful to have been through there so things at least look familiar.

The NICU is where your baby will be taken right after birth and will stay until after the shunting. In the NICU the babies are under constant supervision, they are never left alone. At Duke there are 4 babies in each NICU room and there are two nurses in each room, so one nurse has two babies to take care of. The nurses that we met in the NICU (or the ICN - Intensive Care Nursery as it's called at Duke) were amazing. Every single little need that Owen had while he was there was met. They had him on 24 hour a day monitoring of his temperature, blood pressure, and pulse. They made sure he was comfortable, changed his diapers, absolutely everything. While the baby is in the NICU, you can't stay there 24 hours a day. You can't eat in there and you can't sleep in there. As much as I hated to leave Owen to take care of my own food and sleep, I knew that he was in the best possible hands and it was a comfort to know that he was so well cared for.

Things were not nearly this good on the regular pediatrics floor, but you can read about all of that in our story.
Is it really important that I breastfeed?
In a word, yes. Now I have to admit up front that I have always been a breastfeeding advocate, I breastfed my daughter for 13 months and I certainly planned to breastfeed my son even before we knew he had hydrocephalus. So while I would say yes in general, I also think that there are some good reasons to do it specifically when hydrocephalus is involved. The first reason is that your baby is likely to be born prematurely. Preemies tend to have trouble with digesting formula. The nurses tried to give our son formula in the NICU because my milk had not yet come in enough to give him the amount they wanted to. The formula sat in his tummy and remained undigested until they took it out. I have had other parents write to me and say that the same thing happened with their child. Breastmilk changes as the baby gets older, and it is always the perfect recipe for what they need at their current stage. When they took the formula out and replaced it with breastmilk that I had pumped, he digested it immediately.

The second reason is that your baby is going to be facing surgery very shortly after their birth. An infection in the shunt is a very serious thing and the antibodies in breastmilk help babies to fight infections. A hospital is also a terrible place for a baby to be. The doctor that was just down checking on a kid with a severe case of the flu is the same one that is coming in to check on your baby. They wash their hands a lot and are very careful, but it is still a great idea to have the extra antibodies in the breastmilk in case they are exposed to anything else.

It's a hassle to get started with because your baby might not be able to breastfeed right away and you might have to pump. In our case it was too long after the birth that I was able to start really trying to feed him at the breast and so he never got the hang of it. It's a pain to need to both pump and feed him for months on end, but it's worth it knowing that we're giving him the best start we can. It means that both my husband and I are up for every feeding at night, he feeds the baby a bottle of breastmilk while I pump, but again it is worth it to know that he didn't get the cold that I just spent a week suffering with because he had my antibodies.

Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.