“Happy he’s made it through 365 days”
Critically ill baby’s 1st birthday adds smiles to anxiety
Ryker Shibata-Christensen was wheeled through the intensive care unit Wednesday as his extended family and Colorado Children’s Hospital staffers trailed him.
The procession arrived at the door to a courtyard decorated for the 1-year-old’s birthday party. His father, Chris Christensen, pushed Ryker outside and the baby began to blink, feeling the wind ruffle his hair for the first time. One set of grandparents stayed back, collecting themselves and sharing tissues as they watched Ryker experience the outdoors for the first time.
Ryker, who suffers rare pulmonary and skeletal conditions, celebrated his first birthday at the only home he has known while tethered to a ventilator by the tube that pumps oxygen into lungs constricted by a chest too small to allow proper breathing.
Ryker’s health is dire. He is ventilator-dependent. He has well-developed cognitive abilities and arm movement, but a severe spinal injury means he may never walk. His family has no idea when he can go home.
“If he was taken off (the ventilator), he would probably go into respiratory arrest immediately,” said his mother, Tatiana Shibata. “He has gone into it more times than I wish to know.”
Ryker was delivered early after doctors discovered his lungs had formed abnormally, shifting the position of his heart, threatening his life and leaving little room for his lungs to develop.
While Ryker was in the womb, doctors performed laser surgery to stop the abnormal growth.
The surgery was followed by weeks of ultrasounds to monitor his lungs and heart.
One ultrasound revealed a severely angled spine, a condition called kyphosis, in which the spine forms in a V-shape. It reduces space in Ryker’s chest. As a result, he cannot breathe normally.
At the same time, Shibata suffered health conditions of her own. She developed polyhydramnios, an excess of amniotic fluid that endangered the pregnancy. As her blood pressure climbed, doctors, who feared a normal delivery could further damage the baby’s spine, recommended a C-section ahead of the Halloween due date.
Ryker was born Oct. 18, 2016, and immediately taken to the neonatal intensive care unit. Hours later, Shibata was wheeled, in her hospital bed, to see her boy. He had a tube down his throat and a host of wires connected him to life-sustaining machines.
“Right away, he wasn’t breathing,” Shibata said. “They intubated him for the first couple of months. They tried different ventilators and after three months gave him a tracheostomy,” cutting an opening in his neck and inserting a tube in his windpipe.
Since then, Ryker has moved between the hospital’s pulmonary unit and its pediatric intensive care unit.
Hundreds of doctors and nurses from multiple teams, from cardio to neurosurgery, have worked with Ryker, said Dr. Chris Baker, one of his physicians and the director of the hospital’s ventilator care program.
Ryker’s hospital room is decorated in Broncos paraphernalia –blankets and pillows and signs. His family wore Broncos hats and shirts with “Ryker’s Big Sister,” “Ryker’s Grandma” and the like on the back to his party. Ryker wore a jersey bearing Demaryius Thomas’s No. 88.
“I’m really not a football fan,” Shibata said. “That is Casey, and he is very convinced (Ryker) was conceived on Superbowl Sunday.”
Christensen, a carpenter who builds custom stairways, and Shibata have two other children, Torilyn, 10, and Jaxsom, 5. They do their best to keep the family’s life as normal as possible, Shibata said.
“Ryker is very much a daddy’s boy,” said Shibata, a former Aurora Public Schools preschool facilitator, who is beginning a new job with Metropolitan State University of Denver’s Family Literacy Program.
The couple share child care, with Christensen spending more time with Ryker and Shibata focusing on his siblings. Their schedules are packed. To maximize his time with his older children, who play on separate football teams, Christensen coaches both.
Doctors have tried to shift Ryker to an at-home ventilator, but his body won’t tolerate the change, Shibata said. His right lung tries to compensate for his left, but he’s working with just two-thirds of one lung.
Three weeks ago, doctors suggested a surgery to insert a rod that over time could be adjusted to slowly straighten Ryker’s spine. Eventually, doing so would expand Ryker’s chest and allow his lungs to develop.
The surgery would be performed at Children’s Hospital of Philadelphia, the rare hospital willing to perform it on a child younger than 2, Baker said. The operation is risky on a patient so young, Baker said.
Shibata and Christensen are waiting to hear whether the hospital will accept that risk.
If Ryker is accepted, the family will move to Philadelphia. To help pay for their relocation, the couple has created a GoFundMe page to accept donations.
If the hospital doesn’t accept Ryker, his parents plan to buy a van equipped to transport Ryker and his specialized stroller/wheelchair. Without the van, Ryker would be forced to stay at home and require medical transport for appointments at the hospital.
As staff members prepared the ICU ventilator for transport to the hospital courtyard, Christensen leaned over to his son and said, “They’re going to break you out of this joint, dude.”
In the courtyard, decked out in more football paraphernalia, Christensen announced: “It’s game time, everybody,” and the family gathered to watch Ryker eat his first piece of cake. Except Ryker was not interested. Everyone shrugged. There were enough firsts for the day already.
“I’m happy he’s made it through 365 days,” Shibata said. “There were a couple times we weren’t sure he would. So we’re very happy.”