Less than three months after welcoming twins, Amanda and Ed Bystran lost one of them to RSV – they are now hoping their other son will recover from the same virus.
Amanda Bystran gave birth to twins Brodie and Silas on August 15.
“We couldn’t wait for them to arrive. My older children were so happy they were going to have babies at home,” said Amanda Bystran, who has four other children. “They were eager to meet them and hold them. They were actually born on my 8-year-old son’s birthday,” she told CNN.
The twins were born premature at 34 weeks and struggled from the start. They were discharged from a neonatal intensive care unit after two weeks and then recovered from Covid-19 and meningitis in September, their mother says.
The Bystrans hoped their twins had turned a corner, but in mid-October they both developed congestion and a cough.
The concerned parents, who live in Catlett, Va., took them to their pediatrician – where they tested negative for RSV and flu on Oct. 17 and were told their twins most likely had a cold, said Amanda at CNN.
“They sent us home but then, around Thursday, Brodie quickly got worse. He was really congested and had a really hard time clearing mucus. It was unlike anything we had ever seen,” Bystran said. “He deteriorated so quickly. It’s like one minute he was fine and the next minute he was fighting for his life.
Almost all children get RSV at some point before the age of 2, but parents should be especially careful if their children are premature, newborns, children with weakened immune systems, or neuromuscular disorders. and those under age 2 with chronic lung and heart disease, according to the US Centers for Disease Control and Prevention.
The Bystrans decided on Oct. 20 to take Brodie to Inova LJ Murphy Children’s Hospital in Falls Church, Va., an hour from their home.
This time, a doctor informed her that Brodie had tested positive for RSV and would be admitted to hospital, Amanda said. The family waited 12 hours in the emergency room before Brodie was moved to a bed in the pediatric surgery unit. They then waited 16 hours before he was transferred to the pediatric intensive care unit, Bystran says.
“They were so full. The entire pediatric ward was filled with RSV cases. It was awful,” she said.
The hospital has been operating at or near capacity for the past few days, Inova Children’s Hospital spokeswoman Tracy Connell told CNN Thursday. The hospital also issued a press release saying it had activated its “internal emergency operations plan” to help deal with the high volume of patients arriving with respiratory viruses like RSV and influenza – but assured the public that he was equipped to handle the surge.
Bystran accompanied her son for most of his hospital stay and watched doctors try different oxygen treatments, she said. On the morning of October 22, things got worse and she sought additional help after noticing that the oxygen treatments weren’t working and Brodie was still having trouble breathing, she said.
“They decided to intubate him, so I walked out so they could work on him,” Bystran said. “Then 20 minutes passed and a nurse came to tell me that his heartbeat had dropped and they were doing CPR on him for the last 10 minutes.”
Bystran quickly asked her husband and in-laws to rush to the hospital, but they were unable to do so before Brodie died, she said.
“My heart was shattered into a billion pieces. No mother should have to hold a funeral for her baby. He should have survived me. That boy couldn’t even see three months. It’s not fair” , Bystran said, expressing his grief on Facebook.
The Bystrans’ nightmare is not over: Brodie’s twin, Silas, is still in the hospital trying to recover from RSV. He tested positive for RSV on Oct. 21 in hospital and was admitted a day after his brother, Bystran said. Unlike Brodie, Silas was also diagnosed with pneumonia and was in the intensive care unit for around 16 hours, his mother says.
On Tuesday evening, Silas was moved out of the intensive care unit, but on Wednesday he developed a fever overnight and needed help getting his oxygen levels up, Bystran said.
“We had a really tough night and he’s back to not do so well. Doctors said RSV was a rollercoaster that way,” she said. “They’re fine for a minute and then can go downhill quickly before leveling off again.”
His family are hopeful he will pull through – but deeply saddened that he cannot grow up with his twin.
“Brodie was such a light. A beautiful little child. He was so wanted and loved. It was so nice to see the bond he and Silas shared,” Bystran said. “They preferred to sleep together; they were always touching. It breaks my heart that I can’t watch them grow together. I’m afraid Silas will still feel that hole because he won’t have his twin brother.
As the Bystrans mourn the loss of their son, they warn other parents to trust their instincts.
“If you feel your child’s condition is getting worse and it’s not just a cold, go straight to the hospital. Don’t wait, don’t think about it, don’t doubt yourself,” Bystran said.