The journey has not been easy for Nicole Vote or her son Xander since doctors informed her four months into her pregnancy that he had congenital heart defects.
Vote said doctors told her to abort her son because he would not have any “quality of life.” She refused. Later, she watched her son go through multiple surgeries and a cardiac arrest that nearly claimed his life.
Today, Xander is 2 ½ years old. Though his health is a constant struggle, his mother said he is fighting to overcome each battle.
“He is just starting to try and walk and is such an inspiration,” Vote told LifeNews in an email.
The Iowa mom said she was 16 weeks pregnant with Xander when doctors told them the devastating news about his heart. Doctors pinpointed six different heart defects in the little boy.
“My first thoughts were will my baby even survive? How bad is this diagnosis? Why did this have to happen to our baby?” Vote remembered. “Doctors told us we should abort as he wouldn’t have any quality of life.”
The family said they never even considered aborting Xander.
“… I felt he deserved the chance to live as long as god intended him to live whether that be 1 day or 100 years it was HIS life and not mine to take away,” Vote added.
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The choice was easy for Vote, but her son’s condition still was heartbreaking. Six weeks after he was born, he had his first surgery. In the past 2 1/2 years, he has had multiple open heart and stomach surgeries, and he will need more in the future, his mother said.
Just a few hours after one heart surgery in April, Xander went into cardiac arrest, the family said on their Facebook page. He came through it, but he had to stay in the hospital for more than a month before he could go home.
Today, Vote said Xander goes to therapy regularly and still is behind developmentally, but he is doing much better. The family makes sure they celebrate every milestone, from Christmas cards to birthdays to Xander’s first steps.
“He still cannot truly live the life of a normal toddler because germs/the cold weather … affect him way more than they do the average child,” Vote said. At the same time, he “has overcame so much in his little life,” she added.
Vote runs the Facebook page Xander’s Heart Journey to share updates about Xander, raise awareness about congenital heart defects (CHD) and reach out to other families in similar circumstances.
Vote said she encourages other expecting moms of children with CHD to make an effort to enjoy the time they have with their children, even if it’s only while they are in the womb.
“My advice to all the moms/families that have reached out to us thus far has been first enjoy your pregnancy,” she said. “I know the news is devastating and … every kick and punch, etc. you worry might be the last one you feel …”
She encourages people to seek support from family members, friends and others who have children with CHD. And she said families with older children should talk honestly with them about their sibling’s condition and encourage them be involved and interactive with their sibling.
“… and last but not least ALWAYS trust your instinct and do not be afraid to stand up for your child whether that be to family who just doesn’t understand why you don’t come to giant family gatherings or if it’s the doctor who thinks your imagining things on your child when you know for a fact you saw it with your own two eyes,” she said.
Follow Xander’s story at Xander’s Heart Journey on Facebook.
