Sunday, May 29, 2011

The Diagnosis 5/27/2011 @ 24 Weeks

Today we received some heart breaking news...  Cathy went to her fetal specialist (Dr. BK) and he discovered 2 defects with the baby's heart via ultrasound.  Dr. BK diagnosed the baby with Truncus Arteriosis (see explanation below) and a VSD (Ventricular Septal Defect) [a large hole in the heart].
Truncus arteriosus (TRUNG-kus ahr-teer-e-O-sus) is a rare heart defect that's present at birth (congenital). If your baby has truncus arteriosus, one large vessel, instead of two separate vessels, leads out of the heart. Also, the two lower chambers of the heart are missing a portion of the wall dividing them. As a result of truncus arteriosus, oxygen-poor blood that should go to the lungs and oxygen-rich blood that should go to the rest of the body are mixed together. This creates severe circulatory problems.
If left untreated, truncus arteriosus is usually fatal during the first year of life. Surgery to repair the heart and blood vessels is generally successful, especially if the repair occurs before your baby is 2 months old.

The specialist also performed an amniocentesis to determine if this was caused by a chromosomal disorder.  If so, there may be other medical issues that we will need to be prepared for at delivery.  We will know the results from the amniocentesis in 1-2 weeks.  We have an appointment to go back to the fetal specialist in 2 weeks.  At this point, the Dr's believe the baby will have to undergo surgery after birth to fix his heart issues.  We are not certain how soon after delivery the surgery will take place.  Ideally they want him to be at maximum stability before surgery. 
This is certainly not ideal, but we have already started assembling an awesome team of specialists to give Grant a fighting chance.  Please pray for a miracle.
We decided to start this Blog to keep everyone updated with the latest info.  In the past 2 days, I have been doing quite a bit of research and I have stumbled across some very insightful blogs from other parents that have been through the same ordeal and perhaps this blog will be helpful to someone else.
Next Milestons...  Amnio results (chromosomal disorder or not?) and follow-up appointment with fetal specialist in 2 weeks. 
FYI...  Grant is due 9/15/2011 and we have 12-16 weeks to get our medical strategy together.  We decided to go ahead and name him [Grant] since we were talking about him frequently and calling him "#3" or "Junior" just didn't seem to fit the bill.  We have loved the name Grant Mason Dawson for months now so we went ahead and named him.
Thanks for the outpour of support from friends and family. 

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