Mila currently has been diagnosed with a congenital heart defect:
- Double Outlet Right Ventricle (DORV)
- Both arteries feed into the right ventricle
- The fact that they are not crossed like normal arteries is no longer a concern because of the size and placement of the VSD
- At this point, her surgery will not require an arterial switch... which is amazing!
- with a Ventricle Septal Defect (VSD) - # of VSDs and location TBD
- Hole in the heart - which is good at this point as it allows some blood to mix.
- The main VSD is large which is good
- The location is closer to the bottom of the arteries which is what they wanted to see.
- The shape of the VSD is rare
- There is likely a 2nd VSD in the upper chambers which is normal, less of a concern and will be repaired during surgery
- and Pulmonary Stenosis
- Narrowing of the pulmonary artery - which is good at this point as it limits/controls amount of blood flow into her lungs
- The narrowing has remained small and constant
- Her last echo revealed another vein that will need to rerouted into the correct atrium- this adds a couple hours to her surgery
- Surgery is hopefully happening the next 2 weeks. There are 2 options depending on how she recovers from her viral infection: 1- full repair or 2- shunt put in place and full repair completed at 6-8 months
- We have regular visits with the pediatrician and the cardiologist where they monitor her eating, growth, and oxygen levels.
- Structurally everything else is sound and strong- heart has a good foundation (strong 4 chambers, well-developed system, good blood flow to body and brain, etc)
- She has tested normal on all 4 genetic tests that look for the presence of another syndrome or condition- this appears to be isolated. She did have another round of genetic testing taken and we will review those results in the coming weeks.
- We will be fierce, protective and informed parents
