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05/03/2002 Archived Entry: "Running the Marathon"
The neonatologist to whom my OB referred me is out on maternity leave. After more phone tag yesterday, I was given the name of Rhonda Schonberg, a genetic counselor at Children's Hospital. I left her a detailed voicemail about the baby, and she called back last night.
Geoff & I were on separate extensions so that we both could talk with her ... she was empathetic, reassuring, and patient with our questions.
The cystic masses in Baby's lungs are called CCAMs -- it stands for "congenital cystic adenomatoid malformation" of the lung. And the fluid in her chest cavity (pleural effusion) is apparently related to this. I don't really understand how it's related; that's a question I'll ask. Note that on the linked page, they talk about polyhydramnios -- too much amniotic fluid in the uterus. I don't have that.
CCAM is not a genetic abnormality. In fact, they don't know what causes it -- but they know that nothing I did caused it, and there was nothing I could have done to prevent it. And if I were ever to get pregnant again, the chances of this happening again are very slim.
Rhonda has set us up for testing, starting at 7:30am on Tuesday. We'll have an MRI, so that they can check the extent of the CCAMs, an ultrasound to make sure she's still in there, and a fetal echocardiogram, to make sure her heart isn't under too much pressure from the pleural effusion. After those tests are finished, we'll meet with Dr. Hartman, who is a pediatric surgeon. Rhonda referred to all of these tests as "running the marathon", and promised that by the end of it (sometime in the early afternoon) we'd be too exhausted to do anything but go find a good restaurant for lunch.
We asked Rhonda what will happen after this. She can't give definite answers, of course, 'cause we haven't had the tests yet. But they will monitor Baby with frequent ultrasounds, and if an intervention is needed, they'll know that before serious damage can happen. They try not to operate in utero, because it can cause contractions and I'd end up on bed-rest for the rest of the pregnancy. After birth, if these issues haven't resolved themselves (and there is still a chance they may), the baby will be taken from wherever I deliver to Children's Hospital, where they'll drain the fluid. Depending on the extent of the CCAMs, they may also remove the damaged lung tissue. Otherwise, they may wait until she's older.
Rhonda reassured us that babies can live with even only ONE lung, if they have to. Questions we need to ask on Tuesday: Will she suffer developmentally because of oxygen deprivation, if they have to take out a lot of tissue? And if they have to put in a shunt to drain the fluid at birth, how long will that stay in? What makes the fluid *stop* accumulating?
If anyone thinks of more questions, email me with them, ok? We'll have other opportunities to ask, but we know that on Tuesday, we'll have their (mostly) full attention.
Oh -- I forgot to mention this -- the baby is upside down. She could still change positions, and in the grand scheme of things, it's almost a "so what" sort of thing ... but if she stays this way, we'll end up scheduling a c-section.
That's all I know!