Meet Luke- Our New LCHAD Friend!

Talking to LCHAD moms of older kids has really helped me in our LCHAD journey, talking to them and hearing their stories assures me that eventually this storm of a journey we are in right now will eventually be calm. Thank you Beth for sharing your story with us.

When Mike & I got married, we knew we wanted several children. I got pregnant with Luke on my 1st try and we were elated. He was due in early October 2005. In late July, however, I started not feeling well. I had frequent bladder infections & lots of swelling in my body. I kept getting dismissed as "you're pregnant and it's summertime". On August 20th, after having been to the doctor 3 times that week, I felt the need to call the doctor again. I was nauseated, had a terrible headache, swollen so badly I hardly recognized my own face, and had not peed in days. Tests at the local hospital revealed I had HELLP syndrome & had to deliver within the next 24 hours. Because he was also breech & I have MS, they did not want to risk an epidural with my elevated blood pressure. I was put under general anesthesia, and had Luke via emergency c-section at 4:44 pm. At 33 weeks, he was 4 lbs 12 oz and was whisked away into the NICU. At 5 days old, we were told that he was flagged for LCHAD on his NBS. By day 6, he was ambulanced to Children's Hospital of Philadelphia to be further evaluated & treated. It was a nightmare! After much genetic counseling regarding Luke & my pregnancy complications, it was determined that another pregnancy would be risky. The first few years were very difficult. He was hospitalized numerous times for with various infections, including ROTA virus at 7 months which almost took his life. Over the years, he's had a g-tube insertion and a port insertion to help keep him strong and metabolically stable during illness. Today he is a very active, bright, spirited, caring, & "normal" 9-year-old boy! While we continue to have hospitalizations & dietary restrictions, he has come a very long way. We feel blessed to have been given this wonderful little spirit!