We Have a Diagnosis

We just returned from our appointment at the Fetal Care Center.  The test results did come back positive for a viral infection called cytomegalovirus (CMV).  CMV is the most common congenital (present at birth) infection.  50-85% of all adults get CMV before the age of 40 (it is that common), but most don't even know it.  At some point during the pregnancy, I was infected with CMV, and then the baby also became infected.  The doctor said I could have gotten the virus from anywhere (a child, a gas station, etc.) and that people who are infected rarely even know. 

The risk is that the developing baby becomes infected and the average transmission rate is 40%.  Of the 40% of babies who become infected, only about 10% show signs of congenital CMV, which is what we are dealing with. 

At this time, there are no known or approved treatments for congenital CMV.  We do know that our baby is trying to fight a pretty severe infection and is in that 10% category of actually showing signs of congenial CMV. 

The doctor was pretty straightforward and said that the infection could get the best of the baby and he could pass, or he can keep trying to fight it off.  If he does make it to the point of a delivery or full term, there is the likelihood that he will develop neurological abnormalities such as deafness, blindness or mental retardation.  At this point it is clear that he is still very sick.

Is there anything we can do to help him?  Basically no.  She said that trying to drain the fluid would just cause the baby more distress at this point and will do more harm than good.  Is there anything I can do to improve the situation....take medications, bed rest, eat certain foods, etc.?  She also said no to that.  All we can do is wait and see.  She said that I will come in every couple of weeks to do a sonogram.  I asked if I could come back weekly instead and she agreed.  I have learned that it is maddening to wait two weeks between appointments, wondering if things have gotten better or worse.  She said that there may be some studies that we can participate in that are testing treatments, and we did let her know we might be interested in that.

I expressed my frustration that such a "common" virus does not have a vaccine or a cure yet.  She agreed and said that they are now researching/working on it. 

We did another sonogram and found that all of the same symptoms/issues were still there (fluid, bowels, etc.), but she also found increased fluid in the brain and calcification spots in the brain.  We do not know what stage of the infection we are in (beginning, middle, end, etc.), but because of the additional findings in the brain since our sonogram on Friday, it appears that the infection is still taking over and it is a full body infection.

He did change positions this time and was more sideways than breech.  And there has definitely been increased movement.  I am feeling more kicks and punches than ever and on a more consistent basis.  Whether this means he is getting bigger or stronger, I am not sure.

We have a lot of research we still need to do and are still trying to process everything.  I have read about very promising experimental treatments with hyperimmune globulin - an intravenous treatment.  And I have read about lots of amazing cases where babies were diagnosed with congenital CMV and given slim to none chances of surviving and/or being normal, but they did. 

I asked the doctor if she had ever had a case like this where the baby survived and turned out normal and she said no.  She recently had a case where a baby presented with the same symptoms as ours and was born prematurely with lots of complications.  The parents opted for "comfort care" and the baby passed shortly after being born.  She mentioned problems ranging from deafness to blindness to feeding tubes, etc.

We believe in miracles and the power of prayer and refuse to give up on this baby.  While we may have to make lots of decisions at some point in the future, right now - all we can do is hand it over to God. 

We plan to research more about CMV, and are open to hearing or reading anything that anyone else knows or finds out about it.  Your continued prayers and thoughts are also still needed, and we will continue to update the blog as we continue on this journey.