This site meant so much to me during my pregnancy, so I wanted to add our story-- but I wanted to wait until I had a better grasp of Brian's outlook. I only pause because part of our story is very unusual. However, much of our story is just like that of others, and much I do want to share.
Our lives changed last September, during what was supposed to be a routine 32 week ultra-sound. Since it was primarily to determine the size of the baby, I actually encouraged my husband to skip it and head to work. Thank God he didn't listen.
One thing that struck me reading other stories were how much we were like the other families. We are in our early thirties, extremely healthy, have had great pre-natal care, and have two other extremely bright, healthy kids. So, when the ultra-sound technician showed us the image of our baby's brain and the ventricles were so enlarged that my husband knew that something was wrong before we were told, we were knocked flat.
Our doctor was in an emergency delivery, but we waited around for him for an hour while my husband looked up what "enlarged ventricles" meant on his blackberry. When our doctor did come, I barely heard most of what he said, except for "hydrocephalus" and "aqueductal stenosis." Two things I did hear: we were going to see his friend at Yale the next day, and a professor that had taught our doctor at medical school had had hydrocephalus (before shunt surgery-- it had arrested) and, although he had a large head, he was unquestionably the most intelligent man our doctor had ever known. That comment really set the tone for our medical care. Starting with our own doctor, but even more so at Yale, every doctor we saw was supportive and positive.
Thus began the commute up to New Haven. We started with a very involved ultra-sound, at which they took every measurement imaginable at least five times. They told us that they would do this beforehand, and not to worry about it meaning anything. At the end of the ultrasound, we were told that, aside from the enlarged lateral ventricles, there were no other apparent abnormalities. He was a big baby, and that was good. It was presenting as aqueductal stenosis, and the ventricles were measuring at about 25 mm each. Our doctor said that it was difficult to give a prognosis, our baby would likely be shunted soon after birth, and that some developmental delays were quite possible, and some learning disabilities also possible. He also told us that there was the possibility that our little man would get into Yale on an academic scholarship and walk-on as a starring quarterback. We just wouldn't know for a while.
We had a blood test for infection, and an amnio.
This was the start of the hardest days. The reality began to set in. This was not a mistake. This was not going away. I woke up in the morning thinking about hydrocephalus, and I went to bed thinking about hydrocephalus. I tortured myself by thinking furiously about every last thing I could have possibly done during the pregnancy to cause it. The blood work came back clean. That was good news. The amnio came back clean. That was good as well.
My husband had a batch of business travel starting about a week after we found out. Part of me was tempted to beg him to stay home, to hold me for the foreseeable future. But he was working so hard to be a rock for me, and in trying to be strong, and encouraging him to do something he could throw himself into, ultimately helped me immeasurably. It took away a little of the powerlessness I felt. Slowly over the next seven weeks my smiles became less and less fake.
I had a fetal MRI that was unbearably uncomfortable-- the results were sent to the Pediatric Neurosurgeon we had not yet met. I saw my regular pediatrician for my daughter's appointment. I told him that the baby had hydrocephalus. He smiled reassuringly, and he told me that their practice had a few hydrocephalus kids. "Aside from the shunt, they're just any great patient to us," he said.
Now is where the story starts to become unique. Part of why I wrote was because I read so many stories of doctors encouraging abortion, or giving awful prognosis. I wanted to give the hope that my doctors gave me to anyone freshly diagnosed-- these are some of the best doctors in the country, and they do not see the diagnosis of hydrocephalus as tragic-- just a hurdle. However, I do not want to give anyone false hope. Our story is unusual-- and I will try to write about the unusual part quickly.
Two weeks after the first ultra-sound, we had a second. Our doctor did not see any difference in the size of the ventricles. Huge sigh of relief.
We met with the pediatric neurosurgeon. Aside from the hydrocephalus, the brain looked healthy. He also told us that he does many, many ETVs, and has been quite successful on newborns. He assured us that he would see our baby soon after birth.
Two weeks later, another ultrasound. Still, everything looked good aside from the enlarged ventricles, still, they seemed to be steady at the same size. We decided to have a C-section up at Yale-- partly because it would put up at Yale already, and so baby could undergo surgery (either shunt or etv), and partly because I didn't want baby's head under any more pressure than it was.
The delivery went fine. I was able to stroke Brian's cheek before he was wisked away to the special care unit. His test apgar scores were great. He was 8 lbs, 15 oz. . I was taken to recovery where I spent an age because I couldn't get warm. My husband went to visit the baby-- and took two sets of parents to visit our beautiful baby. (My parents had flown in to anticipate caring for the other two kids for the next couple weeks while we spent most of our time at Yale.)
I had to wait for my visit a few hours. But finally, I was wheeled down to see him. So, so cute. I nursed him and hugged him. I had to go back to my room., but I visited every couple hours. The nurses there were amazing. It was so great to see how much love they showed all the nicu babies.
The next morning he was taken away from nicu for an mri and ultrasound. Sometime mid-day. The neurosurgeon (with team) came by. He said that the ventricles looked pretty much the same, that he was doing great, and he was acting as any pefectly healthy baby would. He said that, rather than do serious surgery, he would prefer that Brian simply get over being born, and that he would look at him in a month. We could bring him up to our room, and he could go home with me the next day.
We couldn't believe it. We had spent the last two months praying for strength, and we were handed a little miracle. The miracle continued. His head circumference moved over the course of regular pediatric visits, from the 90 percentage to the 50-75th. We had a quickbrain mri a month after birth. The neurosurgeon said that, although he couldn't explain it, Brian's ventricles seemed to be getting a little smaller.
He continued to grow-- learned to smile, and develope, if anything, faster than my other two kids. A couple weeks ago, we had a 6 month scan. The ventricles are even smaller. Brian will not need surgery. Our neurosurgeon said that he can't call it aqueductal stenosis, because, as a rule, that does not retreat. Brian was rediagnosed with vetriculomegaly. We went home and bought champagne for the neighborhood. He is a miracle-- and would be with a shunt or an etv. He is a miracle because he is my gorgeous grinning little baby.
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