Jennifer’s Story (MCAD)
It was about 2 weeks after her 1st birthday when Jennifer became sick with croup. She was up all night crying and very restless when she did get some sleep. She had very little to eat and had been running a temperature of about 101 to 102.
It was Monday morning and I knew it was time to go to the doctors so I called in sick to work at about 7am. By 7:30 I realized Jennifer couldn’t even crawl across the floor anymore. I knew she was REAL sick. I figured they would tell me she had pneumonia or bronchitis. Boy! To my big surprise by the time I got her to the Dr’s office she was lethargic, like a dishrag just laying on me! The nurse practitioner took one look at her and told me to immediately get her to the ER and they would do stat testing on her.
We live in a rural area in Missouri and the nearest hospital is about 30 minutes away. By the time my husband and I got her to the ER she was in a coma with a blood sugar of 20. She was not responding to any of the needle sticks when they took lab work. They did a chest x-ray to see if there was any respiratory infection. As this was done I had to hold her head by her hair so it didn’t hang down while she was having the x-ray.
The nurses were running around. We weren’t told anything and that was extremely upsetting! Finally they gave her a bolus of sugar and all of a sudden she opened her eyes and sat up!
They opted to send her by ambulance because she was stable at that time and they had another patient that was in need of the helicopter transportation. On the way to Cardinal Glennon Children’s Hospital in the ambulance the EMT radioed back to the ER physician asking to decrease the IV bag from D10-D5, the physician agreed to do that. By the time we reached Cardinal Glennon and I registered Jennifer in and returned to the ER room, she was lethargic again. I screamed for someone to check her sugar and sure enough it had dropped to 20 again.
The RN and I immediately ran to the Trauma 1 room. They put heart monitors and all different things on Jennifer. They had 10 different specialty Drs come in and evaluate her. They did CAT scans on her brain and found out that the left side was swelling. The Drs moved her to the ICU and a few more specialists came in to see her.
I was in the ICU with Jennifer for 1.5 days when they finally decided that she was stable, as long as they left her on the dextrose. She then was moved to a room right across from the RN’s station so they could keep a close eye on her.
By day 4 they finally diagnosed a metabolic disorder called MCAD. When Jennifer’s Genetic’s Dr, Dr. Grange, came in and explained the diagnosis and statistics on children with this disorder, I was overwhelmed. From what he told us, often the kids don’t make it to the diagnosis alive. I never thanked God so much for my little girl as I did that day.
I want to express my deepest sympathy to the parents who have lost a child with an FOD and to any parent that has lost a child. I came so close to losing my ANGEL. I want to tell bereaved parents that their ANGELS are always in our thoughts and prayers.