Meet Alexandria
ALEXANDRIA’S STORY
Not every hero bears the mark of the obstacles they’ve had to overcome to thrive…but young Alexandria has the scars to prove where’s she been, and better yet where she plans to go. Through her tenacity and determination and the support of the CDH community, along with her mom, Patricia, her dad Ken, and her brother Cameron, she’s overcome more obstacles than the average human could dream of before the age of three. She’s a lively and thriving two-year-old, hugging everyone she sees and using her engaging energy and zest to exceed everyone’s expectations - you’d never guess that she’s already endured and overcome two complex and difficult surgeries, one to repair her CDH and the other to repair her heart. But that’s just the kind of superhero she is.
At her 20-week anatomy scan, it was discovered that Alexandria was missing one artery. Her CDH diagnosis came a few weeks later, at a follow-up scan. The initial diagnosis was hard on the Smith family, not just because of the diagnosis itself, but because their home in Maine wasn’t an area that could support what Alexandria needed. In fact, there wasn’t anywhere in the state of Maine that could–Alexandria’s care was moved to Boston Children’s Hospital. Alexandria’s mother, Patricia, dealt with the CDH diagnosis privately, not wanting to share information with her family or friends, secretly dreading the worst. She also spent her time trying to prepare and educating herself on the condition, to help her daughter.
After another ultrasound the day before Thanksgiving, it was decided they would induce labor right after the holiday weekend. The Smith family found care for their dogs and chickens, called Patricia’s sister to care for big brother Cameron and packed up their bags for Boston.
On November 29, 2018 Alexandria came into the world with a big greeting from the team at Boston Children’s Hospital. Shortly after her delivery she was wheeled over to the NICU. She was as stable and developed as possible for the first few hours, but then had difficulty stabilizing. She went into surgery, during which she suffered from lung complications and another picc line had to be placed, which subsequently didn’t take well and caused a clot. This is where baby Alexandria’s superpowers kicked in, with the help of her medical team, strong advocacy from Mama, and a heart that simply wouldn’t quit, she overcame the clot without having to lose a limb (which had become a distinct possibility).
In her humble opinion, two months was plenty of time in the hospital for Alexandria and in mid-January 2019 they were allowed to go home. After overcoming the first few obstacles transitioning to her “home” home –managing the changing of oxygen tanks, tube feeding through a nasogastric tube, and overall lack of sleep–the Smith family finally got into a good rhythm. She started closing the gap on all of those missed milestones thanks to the endless loving care and support from her parents and lots of physical, occupational and developmental therapy. These days, she’s busy exceeding everyone’s expectations–being a super social and confident, fiery little girl.
As told to Fore Hadley by Patricia Smith aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Alexandria’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.