Before Loren DePina of Alexandria gave birth to her preemie son Cameron last year, who arrived a terrifying and alarming 10 weeks early, she assumed that her experience potty-training her oldest son would go down as one of the most challenging times in her personal parenting history. Today, DePina laughs at how much stress she felt during the toilet training process.
Cameron, who was born on Dec. 2, 2014, spent nearly the first two months of his life in hospitals not only due to his premature birth, but also because of his battle with supraventricular tachycardia (SVT), a congenital defect that causes the heart to beat at a rate faster than 100 beats per minute. DePina still marvels at how she and Cameron made it to the other side, today enjoying a happy and healthy life.
Cameron is a typical toddler today, but DePina said she will never forget the terror that SVT struck in her and the rest of her family. In February, National Heart Month, DePina celebrated one year since bringing Cameron home from Children’s National Medical Center.
“It’s hard to believe that Cameron will be 15 months old in three weeks,” DePina said. “He’s doing really well. Over time, he has been taken off all the medications he was discharged with. Since October, he’s been progressing in the right direction without meds.”
She added that she’s convinced that neither she nor her resilient young son would have survived without the team of doctors and nurses at Children’s National Medical Center, including Dr. Charles Berul, division chief of Cardiology and co-director of Children’s National Heart Institute.
Berul, who has been a pediatric electrophysiologist for more than 20 years, said that while SVT is relatively common, with 1 in 200 children affected by the heart defect, it is difficult to diagnose in infants.
“In infants it is more challenging to make the diagnosis, as they cannot tell you their heart is racing,” Berul said. “Poor feeding, pallor and irritability are the signs to look for.”
Luckily, he added, the treatment for SVT is “quite effective,” and that if medication doesn’t work, there is a curative procedure he performs and Children’s National Medical Center.
Call it mother’s intuition, but DePina said she knew something was wrong with her son aside from the obvious issues that come with a premature delivery like Cameron’s.
“It was the 11th of December, just over a week after Cameron was born,” DePina said. “His dad and I went to visit him at Virginia Hospital Center in Arlington, where he was born. The doctors assured me everything was fine and that he would probably get to come home soon, but I told them, ‘Something is wrong with him.’ The doctors continued to assure me that everything was fine, but I knew it wasn’t true. I’ve never cried so much in my whole life.”
Sure enough, DePina’s fear was confirmed a couple days later, when doctors called her with the news that Cameron had been rushed to Children’s National Medical Center for an inexplicable, and potentially fatal, infection.
“I rushed to Children’s not knowing if I would ever leave the hospital with a baby,” DePina said.
Luckily, Cameron was diagnosed with SVT, and at the outset was told he was very likely to make a full recovery.
Still, however, Cameron battled reflux issues and apnea so severe that he turned blue one day while cradled in his mother’s arms.
“He went through it all,” DePina said. “He had acid reflux, and then apnea as well. The doctors explained to me that because he was such a small preemie, he didn’t know how to get his breathing back on track when he lost rhythm from the apnea. When he turned blue, I lost it. A nurse at Children’s Hospital saved his life. She’s my savior. At one point, she noticed that his blood hadn’t been checked in 22 days. If it weren’t for her testing his white blood cell count, no one would have ever known he needed a blood transfusion.”
Cameron’s struggle with apnea prolonged his stay in the hospital to total more than seven weeks, but DePina said that the whole staff always made her feel so comfortable — every professional taking the time to answer each question both she and her then 4-year old son Jackson had.
“The whole staff at Children’s is phenomenal,” DePina said. “We got there two weeks before Christmas. I wasn’t eating or sleeping and my breast milk was drying out because I was so stressed. I quit my job to stay by my baby’s side. I was there every single day. Children’s gave Jackson a huge bag filled with toys for Christmas. Every time I would see a crying mother admitted to the hospital with her sick baby, I would tell them, ‘If your baby has to be in a hospital, be glad it’s here. This is where you need to be.’ All of us — the other mothers and the doctors and nurses — we became a family. When we go back for check-ups, everyone remembers us by name. Sometimes staff members will call to check up on Cameron. I absolutely love Children’s Hospital.”
DePina said that while she is so grateful that Cameron made a full recovery and will live the life of a normal, active, rambunctious boy, she is still haunted by and heartbroken for the mothers who didn’t have the opportunity to nurse their babies back to health at home. She said, however, she will always find a way to honor the babies who lost their battles.
“Cameron is our miracle baby,” DePina said. “The staff at Children’s introduced me to the March of Dimes Walk in May of last year. We decided to make it a family tradition in honor of Cameron. And, for the other babies who go to Children’s and never get to go home. We met another family of a baby who passed away, so we walk for him, too. You can’t help but hurt when you later find out that one of the moms you bonded with lost her child.”
Even after spending nearly two months in hospitals, DePina still brought Cameron home two days before her due date. As long as Cameron’s hospital stay was, it felt longer. Still, she remains grateful for the full, meaningful life that she knows Cameron has ahead of him.
“His daycare provider tells me that he is healthier than babies who were born full-term,” she said. “No one believes me when I say he was born two months early. He’s right on track with his height and weight. The doctors warned me that he could have turned out deaf or blind for how early he was born and all the issues he went through. But, I can’t see any of that. You should see him now. He’s the fastest little crawler and has taken his first steps.”
It’s hard for DePina to believe that the beaming, beautiful toddler she sees every day, unfazed by shots at the doctor’s office, and always calm when his five-year-old big brother accidentally topples over him, is the same fragile preemie that she brought home just a year ago, hooked up to a breathing machine that would wail like an ambulance whenever he would stop breathing.
“He came home with medications he had to take around the clock,” DePina remembered. “I had to wake myself, and Cameron, up in the middle of the night. My dad and I had a schedule and a chart, all to keep track Cameron’s meds. I was so worried he was going to be on a machine much longer, or need surgery, or that somehow all of this trauma would affect some aspect of his life.”
She said that while she of course wouldn’t wish Cameron’s plight on any family, her advice for mothers with sick and suffering children is to remain as positive as possible — and to avoid the nefarious Internet search at all costs.
“You have to trust your child’s physician and everything they are telling you,” DePina said. “It was so hard for me to not think of the worst case scenario. The social workers told me to stay offline. They could tell I was getting very engrossed in the situation, even though the whole time the doctors assured me that Cameron’s case wasn’t as bad as his original doctors thought it was. So, it is important to keep out that negativity.”
Through the entire process, DePina said she drew strength from her infant son.
“I admire babies who go through so much so early,” she said. “These babies are the strongest people I know — not bodybuilders, weightlifters or other athletes. They have nothing on these children I met in the hospital. Cameron is a survivor.”