Margaux’s CDH Story
In September 2022, at our 20-week ultrasound, we found out Margaux had a left-sided Congenital Diaphragmatic Hernia (CDH). Having never heard of this disease, we began researching the condition and found the Tiny Hero website. Tiny Hero provided valuable information about CDH, but more importantly, it provided us with so much hope for our daughter. We decided to relocate our family to St. Petersburg, Florida, just before Christmas to receive care from Dr. Kays and the CDH team at Johns Hopkins All Children’s Hospital.
On January 17, 2023, Margaux Leonie made her entrance into the world. She required immediate resuscitation and was intubated in the delivery room. Still, over the following days, she 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 patch. However, later that night and into the following day, it was evident that something else was not right. Margaux became visibly uncomfortable, and the ventilator started leaking, causing her vital signs 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 significantly threatened her life.
Despite the scariest moment of our lives, Margaux again 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 we were finally able to hold our Tiny Hero in our arms for the first time.
Margaux’s oxygen was weaned to a nasal cannula shortly thereafter, and we were very lucky that she continued to make progress with feeding and gained weight consistently. We were able to fly back home to Michigan with Margaux on her one-month birthday.
After two months at home, Margaux was off oxygen and weaning from her medications. She is now almost eight months old and doing well. She is an easy-going little girl who loves being around her big brother. He makes her smile and belly-laugh every chance he gets. Looking back at Margaux’s journey in the hospital, we are reminded daily how strong and resilient our precious girl is and continue to be thankful for her lifesaving care.
We would also like to thank the Tiny Hero organization for alleviating part of the financial burden of relocating 1,200 miles away from home to save our daughter’s life.
