Director
Liz lives in Maryland with her husband, Dre and Riley (22 months- severe LCDH survivor). She holds a Masters of Science in Healthcare Administration from Utica College. Riley was diagnosed with CDH at the 15-week ultrasound. This was an early diagnosis that led to a whirlwind of back to back appointments from MFM ultrasounds to genetic testing to ultimately a referral to Johns Hopkins Main Campus Fetal Therapy department in Baltimore. The fantastic team at Johns Hopkins explored all different options and educated Liz and Dre in order to have them make the best decision they could for Riley. Liz and Dre chose to have Fetoscopic endotracheal occlusion (FETO) done on Riley. Riley had the balloon inflated at 28 weeks and then at 34 weeks it was popped. Liz went full term and was delivered via scheduled c-section in October 2021.
Riley was almost immediately placed on ECMO and received his repair at 24hrs of life. He remained on ECMO for 10 days with several failed trials off during that time. Unfortunately, due to CDH, his little body didn’t have enough skin to close him after the CDH repair which led to an additional surgery at 5 weeks. Thanks to the observant team at Johns Hopkins, they also noticed his metopic sutures were fused prematurely which led to another surgery. Riley spent 113 days in the NICU and then Liz and Dre opted to go to a step down to work on feeding. At the end of the stay, Riley received a g-tube. Riley came home shy of 6 months with a gtube and reflux medication. With the infant and toddlers intervention team, Riley caught up to meeting and surpassing his milestones. Today, Riley loves being around other people, big or small and exploring new things. He is an animal lover and wants to do big kid things so badly. Liz cares for her mother who has Alzheimer’s disease and when she gets some free time, enjoys going to the beach and getting some yummy food with friends.
Liz appreciates the wonderful support and connectivity that the CDH community has brought to her family and hopes to continue to be able to connect, support and listen to others that are experiencing and living their journey. There are better outcomes with more communication about best practices and what has worked for different families that can help others. Liz is excited to be part of The CDH Foundation where there can be greater education for the general community and support for the CDH community.