Super Malia

For four months, one TinySuperhero has been exceeding all her milestones: Super Malia! Super Mom Cheryl brings us the story of how far her daughter has come, as well as a sneak peek at how far this hero is still determined to go! 

“We first found out about Super Malia’s omphalocele at our 12 week ultrasound,” says Cheryl. “An omphalocele is a birth defect where the abdomen fails to close during early fetal development, and some of the internal organs grow on the outside of the body. Many babies with omphaloceles have other birth defects or genetic conditions. As far as we know, Super Malia’s omphalocele was not related to a genetic syndrome, though she is still being followed by a geneticist. 

“Pregnancy was a really difficult time. There were lots of unknowns, but we had faith everything would turn out as it should. Finally, on July 6, we welcomed our little girl into this world. She was perfect. The omphalocele was smaller than they had anticipated; it only contained her liver. They were able to surgically correct it when she was four days old! Before, we had been told that she would likely be coming home with the omphalocele and that surgery would take place once she was around a year old, so this was a pleasant surprise. She spent only two and a half weeks in the NICU. 

“Then, after a week of being home, we rushed her back into the hospital because she was having trouble breathing. She was vomiting, crying inconsolably, and losing weight. They found she was born with a diaphragmatic hernia that we didn’t even know she had. Her bowels had protruded through the hole (likely because of the omphalocele repair), and they were surrounding her heart and her lungs, putting her into respiratory distress. It was very scary. She had emergency surgery to repair it, and she came home three days later.

“These days, Super Malia is at risk of the diaphragmatic hernia reoccurring, and she is also at risk of a bowel obstruction because of the omphalocele. She was also born with two holes in her heart that doctors are following. On top of that, two new hernias have formed along her incision line. The plan is to have surgery when she’s bigger and stronger, likely when she is around two years of age. She has been diagnosed with Pentalogy of Cantrell because she has three of the five midline defects characterizing the condition. 

“Still, through everything, Super Malia is a determined four-month-old. She loves to laugh, watch her older brother and sister, and roll around. She especially loves to cuddle! She’s definitely our little miracle, and we know she will continue to exceed her milestones.”

Amazing, Super Malia! We are so glad to have you as part of the TinySuperheroes community. We can’t wait to see what you will do!

 

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