Our Why | Blakely Price
Blakely was diagnosed prenatally with Atrioventricular septal defect (AVSD) and trisomy 21 (Down Syndrome) at 19 weeks. At this time, we transferred all our prenatal and cardiovascular care to Mott Children’s Hospital at the University of Michigan. Blakey was born at 39 weeks in Ann Arbor. After a few hours post-delivery, Blakely showed signs of “wet lungs” from the induced delivery. She was transferred to the NICU and stayed there for 5 days until she was discharged with no medications. Mott conducted genetic testing after birth and it was confirmed that Blakely did have trisomy 21, however, she has the rarest form of it called Mosaic down syndrome. This means that some of the cells in Blakely’s body have the typical 46 chromosomes, while others have the additional copy of the 21st chromosome causing 47 chromosomes in total.
Blakely did well at home and continued to gain weight over the next 3 months. About a month after birth, she began to show signs of heart failure and was put on a Lasix until her open-heart surgery at 4 months old. Blakey continued to gain weight slowly until she reached 10lbs around surgery date, which was January 2, 2018. Her open-heart surgery was completed on that day by Dr. Jennifer Romano at Mott Children’s. Blakely was then in the cardiac ICU unit for the next 11 days as she had some post-surgery complications including a plural effusion that required another chest tube be inserted to drain the excess fluid. In addition, it was found that one of the stitches that was inserted to repair the ASD portion of the defect came detached during recovery. At that time, she was too unstable to take back into the operating room so they will need to repair in the future. Blakely most likely will have another open-heart surgery sometime in 2020 (around age 3) to repair her ASD. The original intent before COVID 19 was to have this repaired prior to cold and flu season.
Given the challenges with having open heart surgery before the age of 1, along with hypotonia (low muscle tone – common in children with Down syndrome), Blakely has had significant delays in her gross motor skills. She been in physical therapy on a weekly basis since her surgery. Up until a few months ago, Blakely used a walker for her source of mobility. Like any typical 2-year-old, she loves to play outside and with other children. After many trips to the park, we realized Blakely could not maneuver around in an independent fashion. Many playgrounds we visited in Perrysburg have an elevated wood frame that holds in that mulch for the playground. Two challenges: 1. Blakely could not lift her walker over the elevated wood frame and 2. Blakely could not use her walker on the mulch to get to the things she wanted to play with or other children. This left her frustrated and relying on mom and dad to carry her around from activity to activity. Prior to Blakely, we never would have seen those two items as a challenge until we faced it personally. This was an eye-opening moment for our family and has made supporting Wood County Plays a no brainer. Having an inclusive playground will allow children with walkers or other devices to assist with mobility to interact and play with children of all abilities. This will be a great asset to the City of Perrysburg, and we can’t wait to see it come together!
Mosaic Down Syndrome