There’s a lovely story that explains the circumstances of parents of special-needs children. Being pregnant is like planning a trip to Italy, but when you give birth to a special-needs child, it’s like you’ve just landed in Holland. Along the way, these parents discover that Holland’s not such a bad place at all — it’s just different.
These days, Jolene Spry is living in Holland. Her first child, Landen, was born Aug. 16, 2012. Before he was born, Jolene and husband Stacy knew things weren’t right. The red flag was that there was too much amniotic fluid surrounding Landen. Normally, babies swallow the fluid and it’s absorbed in their bodies. That wasn’t happening.
Jolene is Dr. Jessica Blumenthal’s nurse at Carolina Women’s Health Associates. She is also Jessica’s patient, and Jessica was concerned. She knew about the extra amniotic fluid from an ultrasound. “But I was concerned there was more to it than that. The rest was just my gut feeling.”
Because of her advanced maternal age, Jolene, 37 at the time of her pregnancy, was also seeing a maternal fetal medicine specialist at N.C. Baptist Hospital. That physician, too, Jessica says, had concerns. “We just couldn’t put our finger on it.”
Jolene had a normal pregnancy. “I felt awesome. I wasn’t sick. It was the best pregnancy.”
Stacy kept telling Jessica, “Nothing’s wrong with our baby. Stop being so negative.”
To which Jessica replied, “It’s my job to worry.”
Jolene tried to remain positive. Additional tests had shown that Landen had a hole in his heart.
But, Jolene says, “I wasn’t thinking the worst.”
Jessica was taking no chances. Jolene, who had tried to get pregnant for two years, agreed. Landen was born at 37 weeks by C-section.
“When he was born, they started checking him out,” Jolene says. “I could hear them talking. I heard Stacy say, ‘Landen doesn’t have an anus.’ I said, ‘What did you just say?’”
This condition turned out to be one of the hallmark indicators of VACTERL association, a condition in which seemingly unrelated abnormalities exist in multiple systems in a child’s body. In addition to the hole in his heart, an esophagus that wasn’t connected right and an anus that did not develop, Landen also had a tethered spinal cord. The spinal cord is usually free within the spinal column. Landen’s is not, which could limit future mobility if not corrected. Children with this condition can have up to seven possible conditions, which also can include limb abnormalities and kidney problems. The word VACTERL is an acronym which stands for the seven conditions that may exist.
Each abnormality can be more or less severe in nature than the others, Jessica says, and each case is different because of this. Only 20 babies are born worldwide each year with VACTERL. Landen was immediately transferred to Brenner Children’s Hospital in Winston-Salem, where he underwent a colostomy within hours of his birth to allow his body to get rid of waste. Two weeks later, he had the first surgery on his esophagus. Further testing identified more structural abnormalities, and he was diagnosed with VACTERL.
He spent two months at Brenner before his parents were able to take him to home to their farm in Mocksville. Even with a feeding tube, Landen wasn’t thriving. He was gagging when he tried to eat. Stacy and Jolene began to research Landen’s condition, and found an esophageal specialist at Children’s Hospital in Boston. They went to Boston in January to get a second opinion.
They’ve been there ever since, but arrived home Monday for an extended stay.
While there, he’s had two major surgeries on his esophagus and trachea, along with open-heart surgery to correct the hole in his heart. Landen faces at least three surgeries in the next 18 months — the spinal cord correction, the anus repair and further esophageal surgery. The good news is, everything should be in good working order by the time he’s 2.
“Landen will have scars on his skin,” Jessica says, “but Stacy and Jolene will have scars on their hearts.”
At present, the goal is for the family to come home before the next esophageal surgery.
“It’s been a hard four months for the family,” Jessica says.
Jolene is on leave from her job, and Stacy works from home for an aviation company, selling airplane parts. He’s been able to work and travel from Boston. The couple has stayed in host homes, although Jolene spends most nights at the hospital if the staff-to-patient ratio is higher than she’d like.
The family has insurance, but friends and family have scheduled a fundraiser to assist with travel, food and lodging expenses. The benefit for Landen “Superboy” Spry is set for 3-8 p.m. Saturday, June 22, at Jerusalem Baptist Church, 3203 U.S. Hwy 601 South in Mocksville. There will be barbecue plates, hotdogs, a classic car show, music, children’s activities and a silent auction. All proceeds will go toward the Spry family expenses.
Jolene and Stacy arrived in town today and plan to attend the benefit. Landen will be there, too.
Since his heart surgery in April, she says, “he’s been great. He’s really come a long way. They’ve also worked with his airway and his breathing is so much better. Basically what we’re fighting now is the esophageal issue.”
Understandably, she’s ready to come home.
“We need to come home for a break and give Landen a break,” she says. “We need to get out of these four walls.”
Jessica will be glad to have them home. It’s been a difficult situation for someone who’s her patient, colleague and friend.
“It’s never easy when I don’t have the outcome I want,” she says. “It’s even harder because this is someone I care about in my personal life as well as my professional life. In this situation, it almost feels like God has a plan and we don’t always know what it is. Landen couldn’t have been put in better hands on this earth than Jolene and Stacy.”
The physician pauses to wipe her eyes.
“They’ll do whatever they need to do to get this little boy where he needs to be. God has his hands around Landen. Some days, it’s just harder to feel that than other days.”
Meanwhile, Jolene continues to adjust to “life in Holland.”
Even with all of Landen’s challenges, she says, “For everything he’s been through, he is happy. He looks like a normal baby. He is beautiful.”
For details about Landen’s benefit visit the Landen Superboy Spry Facebook page.