Quick Facts

Updated as of 10.1.2016

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
At this point we know:
  • 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