PLYMOUTH, Minn. – The Rymer family, of Plymouth, wants to share a message of gratitude after celebrating the Thanksgiving they weren't sure would happen.
During a 20-week ultrasound, doctors detected a rare congenital defect in their son's diaphragm. The medical ordeal that followed made the future uncertain.
"They told us he probably wouldn't make it," said Lindsey Rymer, the baby's mother. "I didn't know if we should be planning a funeral or a nursery."
Their now five-month-old son, Rocco, made it home after nearly 100 days in the NICU, just a few weeks before his first Thanksgiving.
"Just sitting down with our family tonight, they supported us through this storm, it was more like a hurricane," said Rymer.
His diagnosis was a congenital diaphragmatic hernia (CDH) or a hole in the diaphragm. It allowed Rocco's abdominal organs to push into his lungs and chest. In Minnesota, approximately 15 to 20 babies born with a CDH each year.
The Rymers were referred to the Midwest Fetal Care Center, a partnership between Abbott Northwestern Hospital and Children's Hospitals and Clinics of Minnesota, which has medical advances to treat high risk pregnancies and rare cases across the five state region. Dr. Brad Feltis, surgical director of the Midwest Fetal Care Center, estimates that extreme CDH cases like Rocco's occur in one in every 10,000 babies.
"They gave us a really poor prognosis for our baby and just said you know, really the lung volumes we are getting right now aren't compatible with life. That was probably I would say the most difficult time for us because you are mourning the loss of a healthy pregnancy and mourning the loss of possibly a baby," said Lindsey Rymer.
Rymer made it her goal to deliver a full term baby to give Rocco the best chance of life, and he came out stronger than anyone imagined at 11 pounds, 3 ounces.
With his lungs affected, he was immediately put on a heart lung bypass machine known as a extracorporeal membrane oxygenation (ECMO). It stabilized Rocco until he could endure a diaphragm repair surgery but complications rose when the bypass was removed. The Rymer learned he needed ECMO a second time, which came with severe risks.
"It was a really rough night, it was the roughest night that we had. That prognosis was not good, maybe 50-50 at best they could do that," said Eddie Rymer.
The couple picked the name Rocco because it emulated strength and kept hope for their son's prognosis.
"I needed a tough name and I needed him to be a rock," said Lindsey Rymer.
And he was. After 97 days recovering in the NICU, Rocco was strong enough to come home and join his three year old sister, Lucy. Today, he is still on a feeding tube, but is recovering with each passing day.
"Sometimes you just have to put, I think, the numbers and statistics and opinions aside and just move forward with faith and hope because that's all you have," said Lindsey Rymer. "He's just a symbol of defying the odds."
The family planned two separate Thanksgiving dinners with relatives, and Rocco at their side.
"It's a miracle where Rocco is at today," said Eddie Rymer.
The Midwest Fetal Care Center says it has best outcomes in the country for CDH babies who are put on ECMO, such as Rocco was, with survival rates around 80 percent, compared to the national average of 47 percent.
The rarity prompted Children's Hospitals and Clinics of Minnesota to document the Rymer family's journey through videos soon to be released to the public.
A video featuring Dr. Virginia Hustead, who cared for Rocco, explains congenital diaphragmatic hernias here.