I am a newlywed mother of four healthy children and one born with LCDH. At 20 weeks of pregnancy my son, Jacqsuen was diagnosed. I was told his intestines and liver were in his chest and his heart had been pushed to the right side of chest. At 20 weeks my son was given 50% chance to survive. At 35 weeks I was informed his stomach was in his chest and his survival rate was decreased to less than 10%. Jacqsuen was born on February 15, 2008 and was placed on ECMO at 2 days old. He spent 28 days on ECMO and then had repair surgery and Gore –Tex patch placement. At 6 weeks he had g tube placement surgery and stayed in the NICU until 3 months old. He came home with oxygen, monitors and a mic key button.
He has been diagnosed with severe acid reflux, constipation, chronic asthma, chronic bronchitis, pulmonary hypertension and bronchial dysplasia. The past four years he has had illnesses requiring hospital stays but no other surgeries. He had his Mic-Key button removed at 4 years old and is still learning to eat and takes most of his nutrients by bottle. Although Jacqsuen spends most of his time indoors he doesn’t complain. The biggest challenge right now is keeping weight on him.
I am an unemployed paralegal but I have an online bakery. My bakery is called A Different Kind of Bakery because I make sugar free and lactose free goodies. I have two children lactose intolerant and Jacqsuen is not allowed a diet high in sugar or cholesterol.
I am new to CHERUBS but I look forward to being the state rep for Iowa and getting to know the families in my state. I hope to be able to help and support them as much as I have from everyone at CHERUBS.