In late June 2018, Erica Stephens made the long and strenuous move with her military husband from the mountains of East Tennessee to the golden state of California. She left everyone and everything she had ever known to relocate to a new place and start over completely. "Typically when people move away from home, it's thirty or forty miles away, but for me it was almost 3,000," said Erica. Although she was far from the life she had known and in a completely new environment, she adapted quickly and began making friends and building a new life better than she had expected.
In November 2018, Erica found out she was pregnant. "We didn't tell people for a little while," she explained, "I was very nervous because of having diabetes and not knowing how it would be being pregnant." It was extremely difficult for Erica expecting her first child and being so far away from her family, knowing she would not have them by her side. She didn't get to celebrate a baby shower with her loved ones or share those special moments with friends and family that most people get, and with her husband being away frequently due to his job in the military, Erica's feelings of loneliness were only intensified during this time.
In the beginning of the pregnancy, there were appointments every few weeks and a lot of ultrasounds. Everything was going great with Erica's pregnancy and her baby boy was growing perfectly, until the blood work showed otherwise. "It came time for my blood work to check for any abnormalities such as Downs Syndrome, Trisomy 18, etc. I went back for my check-up and was told that he had Trisomy 18 and wouldn't live but a few days or hours past birth and my best option would be to abort the pregnancy." For Erica, this was the scariest moment of her life. She had just seen how perfect her baby looked a few days ago. How could something be so wrong so suddenly? She was alone and trying to keep her emotions at bay because this just couldn't be right. As Erica sat waiting for her husband who was over an hour and a half away to arrive, it felt as if she sat in shock for days or weeks as those moments passed slowly. Once her husband finally arrived, the doctor continued with the appointment by performing an anatomy scan to get a better look at the baby. "He looked perfect and the doctor felt confident that he didn't have Trisomy 18. It's very easy to tell by the shape of your child's head," Erica explained. A wave of relief washed over the expecting parents, but unfortunately, that relief was short-lived as the doctor continued, "But I do have to tell you, your son has several heart defects. Your baby is very sick." That sinking feeling was back. So many questions raced through Erica's mind: How? Why? What? There had to be some mistake, but she couldn't speak a word. The doctor was talking in the background about what he saw, but all she could hear was "surgery", "death", and "consider your options."
It was a long and quiet car ride home that day. Erica and her husband left feeling confused with no real answers. There was, and still is, such little awareness for the disease that "considering your options" was the best answer they could get. They didn't tell family or friends for a long time that their baby was sick while they took the time to consider their options. "As a family, we chose to give our baby hope and the best chance we could as parents," Erica said. After a lot of consideration, Erica and her husband decided to move forward and chose the surgical route for their son in order to give him the best chance at life. Erica was transferred for care three hours away from home to the best hospital she could have had. She began the long, tiring drives to appointments two to three times a week for the last four months of the pregnancy and saw countless specialists. They had no guarantee her son would live past a few days, but Erica and her husband, Jacob, did know one thing: their baby deserved a chance at life.
The time came, when Erica went in to have the baby flipped due to breech positioning, that she unknowingly was in labor and had a severe case of preeclampsia that was beginning to affect her liver and the baby's heart rate, and she was rushed back for an emergency c-section at 37 weeks. Erica says although she had her husband there with her for support, she was scared and incredibly stressed. "I wish a program like Motherly Love would have been out here. It would have made a big difference," she continued.
Jacob Stephens was born at 5:33pm on June 27, 2019. He stopped breathing immediately and was rushed to the NICU. It took a few days for a diagnosis and a guaranteed negative testing for Trisomy 18 before he was transferred to Children's Hospital of Los Angeles at five days old.
Jacob had his first open heart surgery at six days old, performed by a world-renowned heart surgeon who told the anxious parents that their baby had one of the most complex hearts he had ever seen in his years of operating. Jacob did well following his first surgery, but unfortunately had to have a second surgery soon after due to blood build-up in his chest. He was hospitalized for the first 34 days of his life with lots of highs and lows throughout, while Erica and her husband sat defenselessly watching their baby's struggle, knowing there was nothing they could do to take his pain away. "We saw things that no parents wants to ever see. We even saw the inside of his chest and heart beating," said his mother.
Jacob recently had a third surgery in November 2019 because he quickly outgrew the shunt that was added to his heart and had another complication soon after when he had to be prescribed oxygen because his lungs weren't accustomed to the new piece in his heart. Through the last ten months, many medications have been given and many miles driven for weekly appointments, but Erica says nothing would ever change the decision they made to give their child life. Jacob has already overcome so many obstacles in his life in such a short time and is teaching his parents, as well as others who know him, how to be strong every day.
Jacob will undergo another surgery around the age of two, a heart transplant in his 30's or sooner, and continuous heart catheterizations, but his parents still choose hope for him everyday. His mother, Erica, says they have been questioned as to why they would choose to move forward and put a baby or themselves through the hardships they have faced, but Erica says, "He will never be "normal," but he is our normal. I get asked often if it's hard. Yes, it's hard. It drains us daily, but we know if we quit, Jacob will quit too."
Today, June 27, 2020, Jacob celebrates his first birthday and proving just how strong he is. Although his first year of life has been filled with more complications and obstacles than most, he continues to thrive with the love and support of his parents who chose hope and life for him. Through all that he has endured, Jacob's mother says, "He is the happiest little boy I know! He is healthy considering everything he has wrong inside and if he didn't wear oxygen, you would never know anything different." Jacob is #CHDStrong
You can continue to follow Jacob's story on Instagram at @jacobs_courageousheart
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