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.
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
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
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.
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