The Harrises, this year’s March of Dimes Ambassador Family for the Appalachia region, say their lives changed forever during their high-risk pregnancy experience and subsequent premature delivery of their son, Desmond. Due to a pre-existing uterine malformation, Rebekah had been told by doctors that if she were to become pregnant, she would likely experience premature delivery at best and multiple miscarriages at worst.
BEATING THE ODDS
“I knew from the beginning that the odds were against us,” Rebekah said. “I had been told by three different doctors that pregnancy was unlikely, and, if I conceived, I would likely experience a miscarriage around five months or deliver prematurely.”
So when she became pregnant in the summer of 2013, Rebekah said she and Kevin were overjoyed, yet worried.
“It was a strange thing,” Rebekah said. “We experienced all the emotions an average couple would when they find out they’re going to be parents — joy, wonder, gratitude, fear. But, at the same time, we knew the risks we faced, so it was a cautious optimism. I was excited. I read all the books, picked out potential names, and wondered whether he was a boy or a girl. But always, in the back of my mind, I was wondering how we would cope if we lost him.”
As a result of her prior diagnosis, Rebekah and Kevin saw high-risk doctors regularly and had more checkups and ultrasounds than average. While the first weeks of her pregnancy went smoothly, things were about to get complicated.
“We had just found out around 20 weeks that we were having a boy,” Rebekah said. “We picked out a name, and I remember we had just celebrated Thanksgiving with our families. We had almost made it through the second trimester, and we had so much to be thankful for.”
But at only 22 weeks, Rebekah began experiencing lower back pain and abdominal cramping that sent her on high alert. When she went to the emergency room, the Harrises learned that she had already dilated to 2 centimeters. One of the high-risk doctors determined that without a rescue cerclage, a surgical procedure that includes a series of stitches around the cervix to prevent dilation, all hope would be lost.
“I was going into labor,” Rebekah said. “I’ll never forget when it sunk in. It was like time just stopped, and I just went cold with fear for my son. I couldn’t lose him. I had come so far, I refused to accept it. The next morning, I had the rescue cerclage and went on full bed rest.”
Following the procedure, doctors released Rebekah into the care of her husband and her family, but only two weeks later, she began experiencing contractions. When she was in the hospital once more, doctors administered magnesium sulfate to stop the contractions.
“I ended up back in the hospital at 24 weeks,” she said. “It was almost Christmas, and I was originally told I would spend the holiday in the hospital, but luckily, the medicine worked, and a week later, I was back home and able to spend Christmas with my family.”
Rebekah recalled that she was allowed to get up only to use the restroom. Despite being mostly confined to her bed, she got through it with the help of family and by focusing on keeping her son safe. She added that even though it was a scary time, it was one of the best Christmases she has ever had.
“There was a lot of love that Christmas,” she said. “I remember Kevin carried me down the stairs so I wouldn’t put any stress on my body. Our families brought food and presents and gifts for the baby. My sister came and put up a tree in my bedroom. It was a break from the monotony of being in one room and gave me hope that everything would work out in the end.”
The days passed, and the Harrises rang in the New Year. But only a week later, Rebekah went into labor for a final time.
DESMOND BLAKE IS BORN
In the early morning hours of Jan. 7, 2014, Desmond Blake Harris was born at only 27 weeks gestation. He weighed 2 pounds, 1 ounce and was 14 inches long. Thanks to the steroid treatments Rebekah had received at 24 weeks, Desmond’s lungs had been strengthened, and he was already trying to breathe on his own. However, doctors and nurses in the NICU at Niswonger Children’s Hospital in Johnson City explained that, because Desmond was born so prematurely, their journey had only begun.
Already, doctors had determined that Desmond had a brain bleed, an open heart valve, and underdeveloped lungs, all issues typical with preemies that would likely resolve without much of a problem. However, only two weeks after his birth, Desmond contracted a life-threatening E-coli infection in his lungs that necessitated a high-powered ventilator.
Rebekah, who was recovering from an emergency C-section at home and was unable to drive, received the call at home.
“It was horrible,” she said. “I was at home when I got the news, and I couldn’t even drive to go see him. I was completely dependent upon other people to get me to the hospital. My baby was so sick, and I couldn’t be there.”
Fortunately, Desmond recovered from his infection, but the ventilator had damaged his lungs. As the weeks passed, the Harrises experienced the roller-coaster of progress and regression typical of babies in the NICU. His main issues were lung and feeding issues, as well as kidney reflux.
“You know, one day, he’s doing great and breathing better, but the next he’s right back where he was a week before,” Rebekah said. “It’s a crazy, scary journey. It was a month before I could hold him, and simple things most parents don’t think twice about, like changing a diaper, can result in heart-rate drops and pulse-ox alerts.”
By March, Desmond had made little progress with his lungs and had developed feeding issues due to an non-functioning esophageal sphincter. In fact, doctors had told Rebekah and Kevin that their son would likely need a trach to breath, as well as a feeding tube.
“One of the doctors had told me that if things didn’t start improving, he would never breathe on his own,” Rebekah said. “He explained that even with improvement, Desmond would probably always need oxygen and would never run and play like a regular child. He would probably have terrible asthma. He may never eat on his own. It was heartbreaking.”
But, in what the Harrises describe as “typical Desmond fashion” and after a lot of prayer, one day Desmond decided he was ready to breathe.
“One day, I came in and he had moved down to a regular nasal canula,” Rebekah said. “One of the nurses told me it was as if he had just decided he was ready. They moved him to an open crib, and a week or so later, they moved us to a private room, where I could stay with him.”
FINALLY GOING HOME
Then, 135 days after Desmond’s birth and a week after stomach surgery that corrected his acid reflux issues, the Harrises went home with their son. At four months old, he weighed around 7 pounds.
“It was such a wonderful day,” Rebekah said. “He did have a supplemental feeding tube and did come home with an oxygen tank, but we were home.”
At home, the Harrises began a new journey of learning how to take care of their baby apart from hospital staff. Rebekah added that once they came home and throughout their NICU journey, volunteers from the March of Dimes came along beside them to answer questions and help them navigate life with a preemie.
“There was definitely a learning curve and a lot of sleepless nights, but it was good to be home,” Rebekah said. “Since we’ve been home, I’ve gotten to know a lot of people from the March of Dimes. It’s really like a family. Members just come alongside you and help you cope. It’s great to have the support of people who have been through it, too.”
Nearly five years later, Desmond is a happy, healthy child. Despite what doctors told the Harrises, Desmond is active and constantly in motion — with no traces of asthma or lung damage and no need for inhalers or oxygen. His kidney reflux has been resolved, as have all his feeding issues. While he does receive daily growth hormone injections to supplement what his pituitary gland doesn’t produce, Desmond has left all his other health issues behind.
“He’s never still a minute,” Rebekah says, “and he’s such a happy child. It’s a joy to watch him. He just loves life. He’s our little miracle, and we get to witness that miracle at work in him every day. It’s truly amazing. We have a lot to be thankful for.”
VOLUNTEERING FOR THE MARCH OF DIMES
Shortly after Desmond came home, Rebekah began volunteering for the Appalachia Division of the March of Dimes, which helped her to heal by helping other people.
“Before I had Desmond, premature birth was completely off my radar,” she said. “Now, I meet someone at least once a month who has either had a preemie or is going through her own NICU journey. The whole process has made me more aware of the needs of others and just how widespread premature birth is, especially in our area.”
One in ten babies is born prematurely in the United States each year. Through educational programs, research, and family support, the March of Dimes works to raise awareness and prevent premature birth so that every baby has a fighting chance.
The March for Babies event, held each April, will raise money to support mothers and prevent premature birth in East Tennessee and Southwest Virginia. The Harrises will represent the March of Dimes as this year’s Ambassador Family. The Harrises currently reside in Kingsport.
For more information about the March of Dimes, contact Lisa Gates, director of the March of Dimes Appalachia Division at (423) 707-9446 or visit www.marchofdimes.org.