Monday, February 08, 2010

First the Heart, Then the Head, Then the Gall Bladder

Shortly after meeting with the Perinatologist I received several calls from Lucille Packard Children's Hospital at Stanford (LPCH). I was scheduled for several appointments on November 23rd. I was going to have an ultrasound in the morning, a fetal MRI mid day, and a fetal echo in the afternoon.

The whole family (we brought our son with us) woke up early, left the house at 630, and drove almost 2 hours to get to our Palo Alto appointment on time. When we got to the hospital we found out that we cannot bring our son with us. Apparently children his age are not allowed to enter the hospital. So, as much as i would really want my husband to be there with me, he had drive back to Santa Clara and drop him off my aunt's place, meanwhile I had to go to my ultrasound appointment by myself.

The doctor checked on the baby's heart and brain. He did see that my baby has cysts in the brain (ventricular/interhemispheric cysts), but to add to my already long list of worries he said that my baby was missing an important brain structure... the corpus callosum, he said, seems to not be present. I then remembered a student I had who has agenesis of the corpus callosum. She had behavior problems, has vision problems, and has motor issues as well. She was not potty trained either. I also think that her parents don't really care for her much and that she would often come to school dirty. The other children in school didn't really approach her... I think they were afraid of her and also because she smells. I decided to give this child extra care. I would wash her face, comb and braid her hair, brush her teeth in school, and put on some cologne. I figured that I might be able to attract some children her age if at least she was looks and smells clean. All that time I was just thinking about her.. will my baby girl be like her?

When the ultrasound was finished I was sent to go have my fetal MRI. At this time my husband was not yet back from dropping off our son at my aunt's house. I walked to the MRI room in a daze and as I was filing out the patient forms tears just kept falling and they seem to not want to stop.

Eventually my husband arrived and I calmed down a bit. I went to change into a gown and was prepped for an MRI scan. I was going inside this narrow tube that made all these noisy sounds, and I will be staying in there for about an hour to 2 hours. On top of the emotions I already have to deal with that morning was my claustrophobia. I don't think I will be able to stay and keep calm for 2 hours inside that narrow tube.

When I was brought in and I tried to at least move my arms I felt how close and cramped the space was. I yelled, and panicked and I can't breathe. I started sobbing uncontrollably. The nurse tried to calm me down and she told me that if I cannot do it we will schedule it for another time. I told her that its not like I have a choice. I need to get a fetal MRI to be certain about what my baby really has or does not have since ultrasounds can be unreliable at times. And so I did it.

After the MRI we went to go have a fetal echo. I stayed on a bed being poked and prodded with the ultrasound probe for 2 hours. The doctors apologized for having me have to stay there that long but they said it was for my benefit because they are just making sure that they inspected the baby's heart closely. My baby's heart checked out fine and the doctors felt that I didn't need to see them unless the baby shows heart concerns post partum. A heart defect was ruled out.

We then left the hospital and I remember crying all the way to my aunt's house. The only reason I had to stop was because I didn't want my son to see me crying,

A couple of days later I received a call from the doctor at Stanford to let me know that my baby indeed has brain cysts, found out that she didn't have complete agenesis of the corpus callosum (a portion of it was found... it was underdeveloped), AND (on top what my baby already has) she has a cyst by the gall bladder (colydochal cyst). What else could there be?

A couple of days ago I was soo worried about her heart... now it seems that a heart defect would've been so much better.

I started reading about brain cysts and agenesis of the corpus callosum and colydochal cysts. I read that sometimes brain cysts resolve on their own and that sometimes if they do not press on any brain structures it should not affect the individual and that there are people out there walking around leading normal lives and not know that they have a cysts in their head. I also read that if a significant portion of the corpus callosum is present it may be enough to compensate. The gall bladder cyst I think would be easy to address so I was not really worried about it.

But this of course does not mean that I have stopped worrying and crying... my crazy crying fits at night started about that time. I was so uncertain and confused. At the same time I was still worried about my baby's size. So I decided, with advice from my doctor, to take an early leave from work and be on bed rest. My goal was to get the baby as fat as I can before she gets here.

When they told me that my daughter has agenesis of the corpus callosum, I pictures that student that I had who has the same condition... somewhere there picturing myself parenting that child prepared me mentally on what lies ahead.

Although.... being a special ed teacher and a special needs parent are 2 different things... I wasn't sure if the knowledge that I have acquired about special needs children makes me better equipped to handle this or if it just makes it harder for me. Work and home would become similar environments. Could ignorance really be bliss?

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