About three weeks after her youngest son, Tuff Tibbits, was born, Haley Tibbits and her family were sitting at home preparing to celebrate the fourth birthday of their youngest daughter.
As they sat there in familial bliss, Haley looked over to her husband, Chris Tibbits, as he held the newborn and noticed Tuff was breathing extremely fast — 115 breaths a minute fast.
Listening to her gut instincts, Haley rushed Tuff to the Neonatal Intensive Care Unit (NICU) at Providence St. Peter Hospital in Olympia, where Tuff had been born three weeks earlier.
By the time she reached the emergency room, Tuff was struggling to breathe.
A team of doctors and nurses descended on the mother and child and stabilized Tuff as best they could.
“We were completely surrounded by a team within minutes of being there, and they had to intubate him, and they were able to get him pretty stable,” Haley said. “But he needed to be transferred over to a bigger hospital.”
The 3-week-old was quickly transferred to Mary Bridge Children's Hospital in Tacoma. Tuff was first admitted Oct. 1. Three days later, his doctors told Haley they needed to do an ultrasound in order to rule out any possible conditions.
“Less than an hour later, I got a phone call saying, ‘We know what his condition is and it's serious,’” Haley recalled.
On Oct. 3, Tuff was diagnosed with Vein of Galen Malformation. During the ultrasound of Tuff’s brain, doctors found that the blood vessels in the baby’s brain hadn’t formed properly. Veins and arteries in Tuff’s brain connect directly to each other instead of running through smaller blood vessels called capillaries that slow blood flow.
The constant blood flow makes it hard for Tuff’s heart to keep up and pump blood to the rest of his body, leading to heart and respiratory failure. After the discovery, doctors transferred Tuff to Seattle Children’s Hospital, the only facility capable of the care he needed.
As he battles for his life with the help of his family and doctors, Tuff Tibbits has become something of a local social media icon.
The infant also recently appeared on the Seattle Children’s Hospital Facebook page after nurses in the hospital's NICU, with permission from families, dressed their patients in tiny Halloween costumes.
Tuff appeared in a photo, posted with at least 10 others, dressed as a Cutie brand tangerine.
Haley has detailed her son's journey on Facebook since his diagnosis with the rare blood vessel condition, providing updates to supporters in the community, most recently the day before Halloween, Oct. 30, telling her son's story from the beginning.
According to Haley, Tuff has been a fighter since before he was born. Not long after first discovering that she was pregnant with a fourth child, the entire Tibbits household came down with the flu and, during the illness, Haley thought she had lost the baby early in the first trimester.
Two weeks later, Haley and Chris went to the doctor’s office for an ultrasound and, to their surprise, heard the heartbeat of their fourth child.
“From the very beginning, it was like God saved him for us,” Haley said.
After the initial scare, the pregnancy continued as normal. At times, Haley said it was even easier than her previous pregnancies, with labor going quicker and easier than with her first three children.
“He had a very smooth and easy birth,” Haley said. “In fact, the easiest of all of my kids.”
Tuff also appeared normal after being born. The infant was the largest of Haley’s children at birth, weighing 7 pounds and 9 ounces.
After birth, Tuff began breathing quickly just like he would later on. But after being admitted into the NICU and becoming stable, doctors decided Tuff was well enough to go home, chalking the quick breathing up to some amniotic fluid in his lungs. It was likely the first sign of Tuff’s condition.
Vein of Galen Malformation is often detected during pregnancy with the use of an ultrasound, according to Boston Children’s Hospital. While Haley says they did DNA tests and others to check on Tuff before birth, his condition slid under the radar.
“We did all the genetic testing and nothing came back with abnormalities,” Haley said. “It's just kind of a fluke … It was not detected for us. We're just incredibly lucky he survived as long as he did.”
True to his name, Tuff has so far survived his condition, despite being in heart failure. He has also, according to Haley, escaped some of the other symptoms of the condition, including delayed development and neurological disorders. He behaves like any other baby.
“He looked normal. He acted normal, and he still does, which is really a miracle,” Haley said. “So far, is a completely healthy, normal baby that's just in pretty significant heart failure, until they are able to embolize these vessels in his brain and stop the blood flow from overwhelming his heart.”
Tuff received his first brain procedure to close off, or embolize, some of the veins in his brain on Oct. 5 and a second Oct. 8, exactly one month after his birth. Tuff remains at Seattle Children's Hospital, now waiting for a third procedure scheduled for Nov. 18. In the meantime, he continues to grow stronger, according to updates from Haley on Facebook.
Haley is aware that it could take many procedures for Tuff’s condition to be completely addressed, but she hopes he will be well enough after the next procedure to come home for at least a short stay.
“We're hoping and praying that he can come home, you know, within reason, after that next surgery,” Haley said. “But we won't know until after his surgery, and they check on his heart and depending on how the surgery goes.”
