This week has been a lot. On Tuesday we received the genetic results which came back with a microdeletion that is compatible with life but excludes baby from the Mayo clinical trial. On Wednesday morning we consulted with UW and were told no one would consider giving us infusions. This was our lowest point. How could we carry on knowing her genetics are compatible with life, but she will die after birth without infusions?
On Wednesday afternoon, Ezra called a few physicians we heard about through family. We consulted with a physician out of Omaha, NE who agreed with us that although a 22q11.2 deletion will create more hurdles for her, most children with the deletion live long and happy lives. We need to give her the chance to make it past delivery and continue the infusions. He agreed to continue her infusions weekly and got us in his schedule the next day. We are so grateful to this physician, who considered her holistically and agreed that it is a “heroic” measure, but not futile. We packed up Wednesday evening and made the 6+ hour drive to Omaha.
On Thursday morning we received the second infusion. For the first time, we were able to see lung tissue on ultrasound. We are so grateful for the opportunity to give her a chance at life. We know she still has many obstacles to face, but we are happy the genetics result is compatible with life AND we have a stable option for infusions going forward.
On Monday, we are meeting with a physician at Mayo Clinic. We are excluded from the study, but I am hopeful baby can still be delivered at Mayo and receive care from their neonatology team. Another hope I have is that Mayo will continue her infusions as well, but not as part of the study. This is not likely, but we would prefer this for several reasons; one being continuity of care and another being the logistics of travel during a pandemic.
There were many ups and downs this week. It’s been a lot to process. We are physically and emotionally drained. We are grateful for family and friends who support us and for a God who is steadfast. Please pray that the infusions continue to go well and that I don’t go into early labor. She won’t be considered viable by neonatologists until around 32 weeks. Please pray that baby continues to grow and that her lungs develop. We have hope.
Baby Menon 