“Some pregnancies are harder than others.” That is what everyone told Stacie Rhine of Mill Hall during her second pregnancy with her son Cameron.
However, at 36 weeks, Stacie was miserable, and she knew something was wrong.
“I gained a whole bunch of weight real fast. It was like 16 pounds in 16 days,” Stacie said. “I went from gaining 20 pounds during the whole pregnancy to gaining a lot of weight quickly. I was ridiculously uncomfortable.”
She couldn’t wait to lie down and when she would, she could only stay comfortable for about 20 minutes. After that she would be up pacing the floor the entire night.
On July 6, 2010, Stacie and her husband, Larry, called her doctor to see if she could be examined. The doctor wasn’t available so they chose to be seen at Geisinger Medical Center in Danville where her delivery was planned in the next few weeks.
After several tests on Stacie, doctors could not find anything wrong. However, after examining Stacie, Michael Paglia, MD, OB/GYN Maternal Fetal Medicine Specialist, asked for some additional tests on the baby.
“I told him, ‘I don’t think my belly should look like this,’ and lifted up my shirt,” Stacie said. “He looked at it and told me he wanted to run further tests.”
The team of doctors determined that Cameron was suffering from a condition called non-immune hydrops fetalis, a condition that causes an accumulation of fluid inside the baby’s body. Plans were made to deliver Cameron by emergency c-section later that night.
“It was a whirlwind. They said if they took him by any other way than c-section, he would not survive,” Stacie said.
Doctors worked quickly to deliver Cameron and before Stacie and Larry had an opportunity to see him, he was taken to the Neonatal Intensive Care Unit, which would serve as his home for the next five weeks.
Although he was born a month premature, he weighed 10.5 pounds at birth because of the amount of fluid he was retaining. In the NICU, chest tubes were inserted and Cameron was placed on a ventilator to assist in his breathing.
“After stabilizing the baby, we worked to try to drain the areas of fluid from all the body cavities,” said Ray Hayes, DO, neonatologist.
When Stacie and Larry saw Cameron for the first time they were amazed.
“He was so puffy and his eyes were so swollen that he couldn’t even open them,” Stacie said.
“Even his ears were swollen. He looked like a wrestler with a terrible case of cauliflower ear,” Larry added.
The amount of fluid removed from Cameron was amazing. For a newborn to produce so much fluid was extremely out of the ordinary.
“They were using adult measurements to calculate the amount of fluid they were removing,” Stacie said. “When I would go see him, I wouldn’t walk over to the bed until I would see his name. He was shrinking and changing so much, we could have walked over to the wrong kid.”
Cameron responded very well to the treatment and improved dramatically. At one point the NICU staff removed his chest tubes and fed him a bottle.
“The chest tubes were out for a period of time, but unfortunately the fluid recollected and the chest tubes had to be replaced,” Dr. Hayes said. “The fluid kept coming; it wouldn’t stop. The tubes would sometimes get clogged and would need replaced.”
Throughout Cameron’s stay, Stacie and Larry spent a great deal of time in the NICU and could not say enough of its staff.
“They were fantastic. We didn’t have any negative experiences,” Larry said. “Dr. Hayes took us aside privately and explained everything to us in detail. That was very helpful.”
“One of the nurses, who worked another shift, who we never actually met, would call in when she wasn’t working to check on Cameron,” Stacie said.
During their long stay, Stacie and Larry watched Cameron struggle while battling the condition and watched him go through some terrible circumstances.
“We were here some days when he was turning blue and purple,” Stacie said. “We got to the point we knew how blue he could get before a nurse needed to respond. We learned how to read the monitors and knew what the staff was watching for.”
“We actually had some friends come down to visit on one of the worst days and they could see him turning colors and see him physically struggling,” Larry said. “They were amazed at how bad things were.”
At one point Stacie asked Dr. Hayes how many other kids he had taken care of with Cameron’s condition had survived and the doctor responded, “None.” That is when Stacie knew just how serious the condition was.
“It wasn’t anything you wanted to hear, but at the same time you knew he was being straight forward with us,” she said. “Dr. Hayes was with us during the real tough time.”
The most common cause of hydrops is a baby’s blood type not matching mom’s which can lead to a breakdown of the baby’s blood cells. With treatment and medications hydrops is rarely seen these days, according to Dr. Hayes.
“In Cameron’s case the cause wasn’t identified, even after a thorough investigation,” he said. “Hydrops has a mortality rate anywhere from 50 to 90 percent. Depending on the cause the mortality can be higher or lower.”
It wasn’t until August that Stacie and Larry were able to hold and dress their new baby and finally, after five weeks of constant care and draining fluid, Cameron was ready to go home.
“He lost a lot of fluid. He went home at 7 1/2 pounds, which was a little more normal for a baby his age,” Dr. Hayes said. “He still had a condition that needed to be followed by our infectious disease specialist, Michael Ryan, D.O. We are still unsure what the cause of his hydrops was, so he comes back for visits with Dr. Ryan to check on his immunity.”
Children’s Miracle Network at Geisinger funded equipment helped Cameron along the way during his battle for life in the NICU.
“The warmer bed that Cameron was cared for in for the first few weeks of his life, was purchased with Children’s Miracle Network donations,” Dr. Hayes said. “Also some of the monitoring and special care equipment was made possible by Children’s Miracle Network funds.”
Looking at Cameron, now 2, you would never suspect the battle he fought in the first days of his life. He takes a break from playing with his older brother, Brody to look at scrapbook pictures from his stay in the NICU with his mom.
“Look Mommy, that’s when I had the binky,” he says with delight. “In this book I had the binky.”
“Show him your tough guy marks,” Stacie says as Cameron climbs up to sit on her lap.
Cameron obliges and lifts his shirt to show the scars from his multiple chest tubes.
Dr. Hayes can’t say enough about Cameron’s recovery and how miraculous it was for him to overcome such a potentially fatal condition.
“It’s a wonderful story because it has a happy ending,” Dr. Hayes said. “Luckily hydrops is not an extremely common diagnosis. It is a miracle to see your child come through a rough hospital course and today have a healthy two-year-old boy.”