Sweet little Scarlett Monroe was born on Dec 8, 2017 to John and Mackenzie Janin. She was born with a rare congenital heart disease that was diagnosed while Mackenzie was 23 weeks pregnant. Scarlett has Tetrology of the Fallot with Pulmonary Atresia with MAPCAS and VSD; in essence she has no pulmonary artery along with several other accompanying congenital heart defects. She will require a series of surgeries and close monitoring throughout her lifetime. Her first open heart surgery is scheduled for March 2, 2018 and will require a five week minimum recovery. Although the Janins live in Norfolk, VA, Scarlett’s particular CHD cannot be treated locally, so they have relocated temporarily to Chicago. They are staying with John’s aunt and uncle, about a mile from Lurie’s Children’s Hospital, where Scarlett has a rock star team of cardiac specialists and surgeons.
It’s been a challenging journey. When they first received the diagnosis, they did not know if Scarlett would survive after birth and began mourning the loss of their child before she had even arrived. They cancelled the baby shower, stopped decorating the nursery, and focused on finding the right surgeon, specialists and hospital. They had just purchased and moved into their brand new home – and have not really had a chance to truly get settled in their new home. Mackenzie moved to Chicago to be monitored during pregnancy and John followed along weeks later. Once she was born, she lived for 5 weeks in the cardiac unit as Lurie’s, through Christmas and New Years. At one point, she was released to her Chicago home, but she was readmitted back in Lurie’s an hour and a half later due to a necrotizing infection.
Mackenzie and John have done a fantastic job with Scarlett’s care and feeding. Due to Scarlett’s heart condition and inability to gain the energy required to eat comfortably, Scarlett now feeds primarily through a nasal feeding tube. Mackenzie and John feed Scarlett every three hours by feeding tube, replace the tube, monitor her oxygen and breathing levels, treat her recurring thrush, and monitor her acid reflux and feeding intolerance. Feeding can take an hour and a half or more, so with the 3 hour iterations, there is little time for rest. They are encouraged by Scarlett’s speech therapist to continue allowing Scarlett to practice bottle feeding periodically however, her reflux makes it for a lengthy and uncomfortable experience. Scarlett’s progress has been great – even with setbacks along the way.
The last weekend in January, Scarlett's family and friends from New Jersey and Virginia flew in to celebrate her baptism. It was a wonderful celebration and Scarlett looked beautiful. Things are about to change for the three of them as this week Mackenzie returns to Norfolk to go back to work. She needs to return to work in order to keep their health insurance to ensure Scarlett has the health care she needs. You can imagine how heartbreaking and difficult this is for the family. Mackenzie will be traveling back and forth to Chicago on her days off over the next month and John will take sole care of Scarlett to include her tube feedings, administering of medicine, and doctor’s visits.
The heart break of her condition can be overwhelming. They’ve stood strong and given little Scarlett everything she needs to go to surgery. On top of this, the medical bills have started rolling in and combined with the continuing travel costs, and a new mortgage, is impacting their budget. Please consider making a donation to ensure Scarlett receives the best medical care and to allow John and Mackenzie the flexibility needed to take care of their precious Scarlett. Also if you would like to donate frequent flyer miles to help ease the burden of traveling to and from Chicago every week please leave a message in the comments below and Karen Tober will reach out to you.
You can follow Scarlett’s journey through the CaringBridge website https://www.