MJ facing challenge | News | The Press and Standard
by The Press and Standard | March 25, 2016 5:00 pm
Last Updated: March 23, 2016 at 11:24 am
By KATRENA McCALL
Andrea Collum is spending her day the same way she has for many of the last nine months — sitting in the ICU at the Medical University of S.C., holding her son MJ. They’ve been in Charleston since March 13.
That Sunday, MJ was fussy. “He’s really not a fussy baby and that Sunday, he was really fussy, so I knew something was wrong,” Collum said. So she decided to take him to Colleton Medical Center to be checked out, but as soon as they pulled up to the door, he stopped breathing.
It took CMC doctors 10-15 minutes to get MJ breathing again, and they immediately transferred him by helicopter to MUSC, where he’s been in ICU ever since.
He was on a ventilator for a week, but his lungs collapsed again after they weaned him off of the machine. Now is on a different machine called an IPAP to help him breathe.
MJ was born 13 months ago with a genetic mutation called Alagille syndrome. The condition — which only happens in one of 70,000 births — causes his liver not to process bile properly, resulting in a buildup of bile in his liver which enlarges his liver and spleen. The enlarged organs, in turn, press on his lungs so that he can’t breathe properly. “We found out he was sick when he was five months old, and he’s basically been in the hospital ever since,” his mom said.
There’s only one solution: MJ needs a liver transplant.
But there’s another complication that has to be resolved before the transplant can happen. MJ needs to gain weight. “They can do a transplant in babies younger than he is,” Collum said, “but he has to be at a good weight and nutritional level so that he has the best chance of it working.” Right now, MJ weighs only 14 pounds — he needs to weigh at least 22 pounds before being considered a transplant candidate.
So doctors are working to develop a plan to develop a dietary plan that will help MJ digest and absorb his food properly. (Alagille syndrome also interferes with the way nutrients are absorbed by the body.)
For mom, life is a struggle. She has two other children — a son, 10, and daughter, 8 — who stay with her mother, Queenie Collum, while Angela stays at the hospital. And even when she’s home, taking care of MJ is a full-time job, even with her mom’s help.
“It limits my ability to work. I’m a single parent, so I can’t work,” she said. She set up a GoFundMe account, “Help for MJ,” but so far it’s only generated a little over $1,300.
The family was chosen at the 2016 March for Babies Ambassador Family by the March of Dimes, which helps babies born with health problems.