The Meads Family

Scroll down to see updates as the Meads family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory

I am currently 35 weeks pregnant. At 23 weeks we found out our baby, Jackson, has CDH. We were shocked by this news because our anatomy scan with MFM had been normal. Also, we went through years of infertility to end up having to do IVF. In August of 2020, we were finally blessed with twin boys, Tucker and Bennett. At 6 months old they were both diagnosed with a rare genetic disorder called Congenital Disorders of Glycosylation (ironically CDG for short). After months of living at the hospital, they both passed away a week after their first birthday, 30 hours apart from each other. In 2022 we went through another year of IVF now having to focus on genetic testing. In July of 2023 we had another precious healthy boy, Carter. He is 22 months old now and doing great. So it was shocking when we got the diagnosis of CDH for Jackson. The overwhelm of having to go through a medical situation and surgery and hospital stays all over again was traumatizing to think about. However, we knew about Dr. Kays at JHACH because I had a couple friends who had gone there previously. Due to our history and going through hospital admissions where not one of our doctors had ever taken care of a patient with CDG, we found it very compelling to relocate in order to see a specialist for Jackson's CDH. So we have decided to relocate to St. Petersburg, FL from Trussville, AL in order to get the best care for our baby. We decided the logistics could not be the only reason we did not do this, so we are going in faith that everything will work out for the best! We also have a foundation in honor of Tucker and Bennett so we understand and appreciate the work you put into this! Thank you!

Update 7/2/25

Jackson was born on 6/24/25. He came out ready to fight, being called "feisty" from every medical professional he meets! He had his LCDH repair surgery yesterday 7/1/25 at a week old. He is doing great so far and they are planning to extubate him tomorrow! We cannot wait to see his sweet face better!