Expecting a child with hydrocephalus

My Story…………..

 I was 5 months into my pregnancy when I went for an ultrasound. My first pregnancy had not been an issue and culminated into a bouncing baby boy. The next two pregnancies had not been so successful; I had suffered miscarriages at 3 months on both occasions. So at 5 months gestation with my fourth pregnancy, things were looking up.  I lay comfortably on the couch and waited for the doctor’s exploring probe on my tummy. I was not prepared for what was to be revealed!

“ ..these are the toes, the tummy, here is the cord, aha, the scrotum….” he declared each find with a low, reassuring voice. But then his voice waned and he went mum but the motions of his probe on my tummy increased. I looked up just to check what he was doing and met with a grim looking face.

“What’s wrong?”

 “Your child seems to have hydrocephalus” he said with some hesitation

 That was quite some big word. It sounded bad and ominous. I was scared to ask him what it was but I asked anyway. I was the one carrying the child with hydrocephalus and I needed to understand. So what did I find out?

That the brain has sac like spaces inside it called ventricles. These spaces produce and contain some fluid called cerebral spinal fluid. This fluid flows and also surrounds the brain and tracks down to the spinal cord. If there is obstruction in the flow of this fluid or if it is over-produced, the ventricles are blown up and expand. When the ventricles expand, they push the brain and squash it. The head of the child also expands to accommodate the ballooning brain. The resulting condition is called hydrocephalus. Children with hydrocephalus usually have developmental problems and tend to develop much slower than their peers. The degree of physical challenges varies considerably; I have been told of a couple of doctors who had hydrocephalus in infancy. But at the other end of the spectrum, I know of families who have had to deal with completely debilitated children/siblings.

Of course I did not understand all these at that moment. Some of the information I got from the doctor, some I found out from others, and from my own reading. Together with my husband, we carried this devastating news to my obstetrician. There, things weren’t so interesting either. My cervix was found to have opened slightly and the fluid that normally surrounds the baby, the amniotic fluid, was leaking out. I needed to be on bed rest for at least a month. Things were tight at work and I was not sure my employer would let me break!

 I have since had seven ultrasounds from different ultrasound doctors and have been to three different obstetricians. Nobody is sure and I don’t know what sort of child I will get. I have amniotic fluid leakages on and off.  At one time, we made the decision to terminate the pregnancy. But we changed our minds. At seven months, my baby kicks like crazy. Sometimes I feel like he is sending Morse code messages. We have named him Leo. My four year old son is excited at the prospect of a “little, brown” baby brother. We told him that the Leo was unwell. He offered to give up his cough medicine to make his brother better. Telling him was the way we knew we could prepare him for the worst. The remaining two months seem a like a century to go. I pray I will survive.