Meet Margaux
MARGAUX’S STORY
In September 2022, at their 20-week ultrasound, Margaux’s parents found out she had a left Congenital Diaphragmatic Hernia (CDH). Having never heard of this disease, Nate and Vanessa began researching the condition and decided to relocate their family to St Petersburg, FL, just before Christmas, to get care from Dr. Kays and the CDH team at Johns Hopkins All Children’s Hospital.
On January 17th, 2023, Margaux Leonie made her entrance into the world. She required immediate resuscitation and was intubated in the delivery room, but over the following days demonstrated remarkable resilience and was able to be on relatively low ventilator settings and medication.
On her sixth day of life Dr. Kays performed her repair surgery, patching the hole in her diaphragm with a guitar-pick shaped piece of Gore-Tex. However, later that night and into the next morning it was evident that something else wasn’t right as Margaux became visibly uncomfortable and her vital signs started to diminish. Dr. Kays stepped in, quickly diagnosed a fluid buildup in her chest cavity, and placed a pair of chest tubes to relieve the pressure on her lungs. It was later confirmed that Margaux experienced a rare complication associated with her PICC line, which greatly threatened her life.
Despite the scariest moment of her parents’ lives, Margaux re-proved her strength by progressing steadily in her recovery. Within a week she was able to have her chest tubes removed, to be extubated to CPAP, and to be held in her parents’ arms for the first time.
Margaux’s oxygen was weaned to nasal cannula. She continued to make progress with feeding and gained weight consistently. Margaux and her parents flew home to Michigan on her one-month birthday.
Margaux is now three months old and doing well. She is off oxygen support and is weaning off the last medication. She is a very easy-going little girl. She loves being around her big brother who makes her smile every chance he gets. Looking back at Margaux’s journey in the hospital, her parents are reminded every day how strong and resilient their precious girl is and continue to be thankful for the lifesaving care she received.
Nate and Vanessa would also like to thank Fore Hadley for alleviating part of the financial burden of relocating 1,200 miles away from home to save their daughter’s life.
As told to Fore Hadley by Vanessa Reynolds 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.