Family and friends rally for baby born with hypoplastic left heart syndrome

LOGAN - All married couples dream of having happy, healthy babies but sometimes that is just not the case. For reasons unknown, God oftentimes challenges couples - sometimes making their lives a hardship - but never a burden.

Often God challenges parents in ways that no one could ever understand but He will never give anyone more than they can handle - such as the case with Dawna and Levi Hartman.

When Dawna became pregnant with her second child, she had no idea that anything could possibly be wrong. She and Levi already had one healthy child, so the couple never gave it a second thought that anything could be wrong - that is until Dawna went for a 20-week ultrasound.

"We went for our routine 20-week ultrasound and the midwife told us that she saw something on the baby's heart and she was referring us to Nationwide Children's as a precaution," stated Dawna.

Two weeks later, she had a follow-up fetal echocardiogram at Nationwide and that's when she received the devastating news - the baby she was carrying was diagnosed with hypoplastic left heart syndrome.

"At around 22 weeks we had a follow-up at Nationwide and they told us the diagnosis that day," she added. "We had never heard of HLHS before we were given our diagnosis. It was earth-shattering to us."

Each year, nearly 40,000 babies are born in the U.S. with a congenital heart defect - many of which lead a normal independent life with little to no difficulty at all. Of those babies, it is estimated that one out of every 4,344 babies are born with hypoplastic left heart syndrome.

Hypoplastic left heart syndrome is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form properly.

Despite the heart defect, Dawna said she had an overall normal pregnancy right up to the day that Chase was born - Aug. 8, 2016, which also happens to be her birthday as well.

Throughout the following days, baby Chase had several procedures including a hybrid on Aug. 10; and a balloon atrial septostomy catheterization on Aug. 17. On Dec. 5, Chase had a heart catheterization to place a stent; and in January 2017, he had two procedures including a heart catheterization to assess for blood clots.

Even during all of the procedures, Chase was still able to smile for his parents. "He is such a fighter," stated his mother.

However, the long journey ahead now leads to another surgery - when Chase turns two - to complete the three-step repair to his heart. Unfortunately, Dawna noted this isn't a complete fix, as Chase will always have issues with his heart.

"There is always a possibility of him needing a heart transplant," Dawna said. "Although the timeframe is uncertain. We were told he had a 98 to 99 percent chance of survival from our surgeon. All kids with this condition are completely different from another, and not all have the same prognosis that we do."

After spending 21 days in the hospital, Chase is now home with his family but he is not out of the woods yet - he takes medication daily, including injections twice a day.

"We have many follow-up appointments, as well as therapies to improve strength and swallowing as he became very weak during his 21-day hospital stay," Dawna continued.

Chase is continuously improving but has a nasogastric tube that runs from his nose to his stomach for feeding purposes because he is unable to swallow on his own at this time.

"When we first found out our whole world was crushed," Dawna added. "Then with the help of our family, friends, and mostly God, we came to the understanding that Chase was sent to us for a reason. Although we may not know the reason yet, I'm certain God has a plan for us and He sent us Chase.

"We have put our faith in God that Chase is taken care of. We never take a second for granted, as we are never promised the next. We try to not think of the negative side of this defect, but we try to stay in the moment and live for the good times. We have an amazing support system in our families and friends and our church family, so that helps as well.

"One way we keep ourselves positive is to think of the name we gave him - Chase Hemi," she remarked. "We chose Chase Hemi because hemi by definition means half. Since he only has half of a heart, we chose to honor that part of him by giving him a name that is strong like he is, and means a lot to us. When we hear or think of his name, we are reminded that he is so strong and brave, and although he only has half of his heart, he is such a fighter."

At this time, Chase doesn't have any restrictions, but over time that will change as he will be prone to tiring easily, which could limit his activities.

For those interested, the family started a Facebook page - Prayers for Chase - where people can leave thoughtful and encouraging words for Chase and his family.

According to the Centers for Disease Control and Prevention, the cause of heart defects such as HLHS among most babies is unknown.