Matt Schwartz sat in a mahogany rocking chair in his mother's basement in April, leafing through a 3-inch binder of medical papers.

His son Houston, then 5 months old, lay next to him under bee-and-teddy-bear mobiles in a light wooden crib. A bag of formula hung beside the baby on a metal IV pole and fed him through a tube directly into his stomach. A scar on his chest marked where his ribs were cracked during two open-heart surgeries.

He weighed 8 pounds 4 ounces, half of what he should for an infant his age. Breathing tubes clung to his face. A glowing red light, taped to his left foot, monitored his pulse.

A poster on the wall detailed how to give an infant CPR.

Sunlight and signs of spring peeked through a small window, shining life on Houston in the dim room lit by two fluorescent bulbs.

Schwartz's mind spun, and his heart ached. The 34-year-old knew he couldn't have the time he wanted with all four of his kids. Spending months next to Houston's bedside meant he usually missed helping his kids get ready for school, taking them outside to play and giving them their baths.

He worried about stability for his three healthy children, while trying to hold death from his youngest.

He did it all while knowing he could never do enough.

A baby on the way

Jenn Nagle, 35, delivered Houston a week early at York Hospital in November. Doctors saw the baby's right hand was blue, diagnosed him with a congenital heart defect and had him flown to Penn State Hershey Children's Hospital. He had open-heart surgery to reattach his pulmonary veins.

Doctors thought he would be OK, but they warned the baby could develop another condition -- a narrowing of his veins -- as a complication from surgery.

A few weeks later, Schwartz brought Houston home. But it wasn't really home. Schwartz said they had been living in his mother's basement since June 2011. They moved there because Schwartz couldn't afford increasing rent and wanted to save for a few months to buy a house or a trailer. He also applied for food stamps and cash assistance. Houston slept in a Pack n' Play because he didn't have a crib.

"I tried to stay away from welfare," Schwartz said. "I didn't have a choice."

He had been away from work for about a month for Houston's surgery, but said his employer told him he'd qualify for assistance under the Family and Medical Leave Act.

When he returned from Hershey and called to say he could start working again, a human resources employee told him he didn't qualify, he had been fired and a letter had been mailed to inform him.

"I freaked," he said.

He started applying for jobs and filed for unemployment, which he said was rejected.



Stitches from Houston Schwartz's open-heart surgery at Children's Hospital in Boston are seen after his return to Penn State Milton S. Hershey Medical Center. (DAILY RECORD/SUNDAY NEWS -- CHRIS DUNN)


Critical diagnosis

In January, Schwartz still didn't have a job and said he spent most of his time applying for positions online. Though he felt a sense of urgency, he didn't think he'd be unemployed for long.

Then Houston's blood pressure started to rise, and his veins became visible through his skin. He needed a second open-heart surgery to unblock and reconnect his pulmonary veins.

As his doctors had warned, his veins were narrowing.

"Unfortunately this condition is progressive and often fatal," said Dr. Vincent P.R. Aluquin, one of Houston's several cardiologists at Hershey.

Schwartz said he researched the disease and found no answers, organizations fighting for a cure or specialists. Doctors told him to make every day count. He stopped looking for work.

He traveled to and from Hershey for about a month, where he roomed in a Ronald McDonald House. He brought his 4-year-old son Kyle and Houston's mom, who's also unemployed. His mother, Gail, watched 7-year-old Lexy and 5-year-old Austin at her home in Springettsbury Township.

He struggled to fill the gas tank of his 1995 Pontiac Bonneville to make the drive. He said he gradually sold most of what he owned: TVs, a surround-sound system, couches, bed frames, dishes and his kitchen table -- anything void of sentimental value.

After about a month in the hospital, Houston was discharged. Matt, Houston and Nagle joined the other kids at his mom's house.

Gail Schwartz, who's on disability, said she and her husband are struggling financially, but they offered the basement and to help with the kids.

"When the best you can do is this, you make room," she said.

Life 'falling down'

In March, Houston's veins narrowed again, and he was readmitted to Hershey.

Aluquin said Houston's doctors feared he wasn't stable enough to undergo another open-heart surgery.

As Schwartz drove home after taking Houston to Hershey, a car rear-ended his. The crash damaged the frame and caused fluids to leak. He worried he wouldn't make it back and forth from Houston to his other kids.

"Everything just started falling down around me," he said.

Houston's doctors told Schwartz about a clinical trial at Children's Hospital Boston, which has a team that specializes in pulmonary vein stenosis -- the narrowing of the veins. Schwartz said his insurance wouldn't pay for a transfer to Boston.



Houston Schwartz, then 5 months old, lies in his crib as his older half-brother Kyle plays a video game in their grandmother's basement, where their family is living for now. (DAILY RECORD/SUNDAY NEWS -- CHRIS DUNN)

The baby's condition worsened. He was on a ventilator and malnourished because he had trouble gaining weight since birth.

At Hershey, Dr. Howard S. Weber performed a balloon catheterization procedure to open the veins, and doctors followed part of Boston's protocol for treatment, which included the trial drug Gleevec. However, Boston's doctors have more experience with the disease because of the study.

"Ideally, we wanted him to be enrolled in the trial," Weber said.

But Houston was 400 miles away from Boston and treatment that Schwartz hoped could save his son's life.

Hitting bottom

A few weeks after Houston's surgery in Hershey, his condition had stabilized, and his veins were open.

However, Schwartz still didn't have a home. He had little time to find a job, and he wouldn't have time to work even if he were employed.

Days before Houston was released from Hershey in April, Schwartz scrambled to arrange a living space for his critically ill child: a roughly 12-by-15-foot area in the basement where nurses and hospice workers would come daily.

He said insurance wouldn't pay for a medical crib, and he had only a Pack n' Play that wouldn't fit Houston's oxygen tanks and monitors. He also needed an air purifier. He didn't have money to buy either.

Schwartz had created a Facebook page for Houston in January to inform his family and friends about the baby's condition. He also begged people to rally with him against his insurance company.

In March, Shae Kokomoor of Evansville, Ind., had clicked on a post about Houston. She had seen photos of Houston when he was close to death. In one photo, his big gray-blue eyes look wider on his sunken face; a tube enters his protruding ribcage.

Kokomoor offered to help. She didn't have much money to give, but the stay-at-home mom had time to ask for donations.

Schwartz didn't feel right accepting help. He wanted to do it on his own. He felt emotionally and physically drained, and hurt that he couldn't provide for his children. His greatest fear was that he wouldn't be able to pay for a proper funeral for his son -- a thought that haunted him.

"Finally, I broke down," he said.

Kokomoor has been making phone calls for hours each day since March, while many people have thought her story was a scam. She reached out to businesses in Evansville and made connections with people, churches, businesses and organizations in York County. She collected gift cards, a crib and a rocking chair, among other donations.

"I can't imagine my child laying there fighting for her every breath, every minute, every hour," Kokomoor said. "I just couldn't get that out of my head."

'This is not what I want for them'

By mid-April, Houston was in stable condition, but Schwartz knew he'd get worse. He saw Boston as Houston's only hope. While caring for Houston at home, Schwartz kept his eyes on getting him there.

His days revolved around Houston's medications, homework, visits from hospice workers, shuttling Houston to doctor's appointments and meal times. Insurance paid for eight hours of nursing from 11 p.m. to 7 a.m. Schwartz slept for a few hours each night. Otherwise, he was by Houston.

Nagle -- Houston's mom -- lives with the Schwartzes, but she hasn't been as involved in his care. She and Schwartz aren't together.

Lexy and Austin came home from school on a recent afternoon and joined them downstairs. Austin pulled a "good behavior" certificate from his book bag as Schwartz helped Lexy with her math homework at a desk a few feet away from Houston's crib. He asked Lexy if she wanted him to paint her nails later that night.

Schwartz wanted to take Houston and the kids to the park after homework, and before dinner -- frozen lasagna -- and the baby's 8 p.m. medication. He urged the kids to finish their homework as they pleaded with him to go to the park first. They wanted his time.

They made it to the park and stayed for a couple of hours before stopping by Kmart just to walk around. Schwartz won that day.

Tim Schwartz, 25, of Red Lion said his brother now prioritizes everything.

Matt Schwartz worries how this will affect his kids, yet he knows his time with Houston is likely limited.

"Lexy and Austin understand that Houston is visiting, and then he's going back up to God," Schwartz said. "Kyle, he's only 4."

Lexy recently asked him to tape breathing tubes to her doll. She gives the doll shots before she goes to school.

"Every parent wants to give each child the same amount of time," he said. "This is not what I want for them."



Registered nurse Katie Wagner checks monitors as Houston Schwartz, 7 months, lies amid a tangle of tubes and instruments in the pediatric intensive care unit at Penn State Milton S. Hershey Medical Center earlier this month. He had just returned from Children's Hospital Boston, where he had undergone multiple procedures, including open-heart surgery. (DAILY RECORD/SUNDAY NEWS -- CHRIS DUNN)

Hope in Boston

In April, Kokomoor contacted Christi Bernlohr, 42, of Manchester Township and asked her to take photographs of the baby for the family. Bernlohr volunteers for Now I Lay Me Down to Sleep, a nonprofit that helps parents cope with infant death by taking pictures. Bernlohr felt a similar connection to Houston.

Bernlohr's husband, Chris, owns York Volkswagen and she asked him to look at Schwartz's damaged car that he needed to get to and from Penn State Hershey Children's Hospital and, possibly, Boston. Instead, Chris Bernlohr and Doug Augburn of Red Lion Chevrolet gave Schwartz another car in May because his was too damaged.

Kokomoor called Children's Hospital Boston and asked if Houston could be seen on a compassionate-care basis. Schwartz said the hospital agreed, but he couldn't afford lodging.

June Jennings, a senior event manager for DoubleTree Suites by Hilton in Boston, saw a post about Houston on Facebook and asked her manager if the Schwartzes could stay at the hotel.

Schwartz drove Houston, his three kids and Nagle to Boston on May 10, as Bernlohr followed for the drive.

They planned to stay for a few days for a consultation and tests. By the time they arrived, Houston was dehydrated, and his veins had been narrowing for weeks. He needed another ballooning procedure.

Schwartz said Houston's doctors also recommended another open-heart surgery, but they weren't sure if he would survive. Schwartz wanted the surgery done at Hershey, but he didn't know if Houston could make it back.

He wanted the best for Houston, but knew his other kids needed stability, even if stability means living in their grandmother's basement.

An open-heart surgery in Boston could mean months of recovery. How would he pay for parking? How would he continue to be a father to his other children? What if Houston died?

"They cannot cure him," he wrote in a text message. "Everything they do will only buy him more time, and there is no guarantee of that. I am terrified."

Breaking point

Schwartz signed the papers for the surgery May 18 and vowed to get Houston back to Hershey.

Houston survived the operation, but he had several complications. Schwartz said the baby's pain was relentless, he had lost weight, and he was under anesthesia several times.

Schwartz said he couldn't even hold his son. Weeks after his surgery, Houston stared at Schwartz with a blank expression, dull from medications.

"It broke my heart," he said from Boston, as he watched his three kids splash in the hotel pool. "He looked at me like he didn't know me."

Schwartz wanted Houston back in Hershey where his doctors know him best, but Boston's doctors needed more time, and Houston needed to be stable.

Schwartz had expected the trip to Boston to last a few days. After two weeks, he and his family were still there, spending hours each day waiting in the hospital. He drove his other kids back to York County so they could finish the school year. He went back to Boston to wait for Houston.

He fears each decision he makes for the baby, never knowing if his choice will harm Houston more than it helps. The more time Houston lies in a hospital, the less time he has at home with his family.

"That takes away from the time he has left in his life," Schwartz said.

He will always feel as if he should've done more. But there will be a point when he'll say no to more surgeries.

It might come when he looks at his son and can't bear the pain each procedure causes; or when that gut feeling hits, telling him nothing else can be done; or when Houston's declining quality of life outweighs the father's will for his son to live.

At that moment, he said, keeping Houston alive would become selfish.

Epilogue

On June 5, Children's Hospital Boston transported Houston to Penn State Hershey Children's Hospital, where he was admitted to intensive care.

Schwartz plans to start looking for a construction job and wants to move his family to Hershey so they are near the hospital.

He hopes to bring Houston home one more time.


About TAPVR

When Houston Schwartz was born, his pulmonary veins, which should've been connected to the left atrium of his heart, were connected to the right atrium. The rare congenital heart defect is called total or partial anomalous pulmonary venous return.

Normally, the pulmonary veins carry the red blood that picks up oxygen in the lungs back to the heart to be pumped into the body. Typically, the right atrium receives only blue blood, which has no oxygen. But in Houston's heart, the red and blue blood mixed in the right atrium, overworking that side of his heart.

The condition causes cyanosis, a bluish discoloration of skin and lips, and difficulty breathing. Severe cases will develop severe cyanosis, difficulty breathing, low blood pressure and excessive acidity in the blood.

TAPVR accounts for 1 to 2 percent of patients with congenital heart defects, which translates to about one to two babies out of 10,000 live births.
-- www.childrenshospital.org, Dr. Vincent P.R. Aluquin


About pulmonary vein stenosis

After Houston Schwartz had open-heart surgery in November to correct his congenital heart defect, he developed a complication from surgery.

The rare condition is called pulmonary vein stenosis, which causes an obstruction in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins at the same time.

The stenosis occurs because of abnormal cell growth, making the veins' walls thicken and narrow. The condition frequently gets worse. As a result, someone can lose partial or total flow to vessels.

To treat the disease, doctors can widen the veins in an open-heart surgery; attempt to stretch the vessels by cardiac catheterization with balloon dilation; or do a transplant to replace the lungs and the pulmonary veins.

Response to surgery or catheterization is usually short-lived. Typically, within three to four weeks, the obstruction recurs, and repeating surgery provides only a temporary fix.

In some cases, a lung transplant may be an option, but it comes with risks, including rejection of the transplanted lung and serious infection. Patients must also take immunosuppressant drugs for the remainder of their lives to help reduce the chance of the body rejecting the new lungs.

Many children with the most severe form of pulmonary vein stenosis do not survive past early childhood.

-- www.childrenshospital.org


To donate

Houston Schwartz was diagnosed with total anomalous pulmonary venous return when he was born in November and later with pulmonary vein stenosis, which is often progressive and fatal.

Donations for his medical care and the family's needs may be made to the Houston Schwartz and Family Benefit Fund at any M&T Bank branch or mailed to M&T Bank, 1000 Haines Road, York, PA 17401.


Children's Hospital Boston program

The Dana-Farber Cancer Institute and Children's Hospital Boston are conducting a research study in patients who have multivessel pulmonary vein stenosis.

Dr. Kathy Jenkins leads the pulmonary vein stenosis program at Children's Hospital Boston.

She said doctors don't know what causes the overactive cell growth in the veins.

Boston's program aims to attack that growth with two standard chemotherapy drugs, rather than just opening the veins through surgeries. The protocol includes a more aggressive surgery to remove the cells.

Jenkins said that approach has been successful for some patients. However, some babies don't make it because of the aggressiveness and severity of the disease.

"Our hope is that we get a better understanding of what's causing this and that we ultimately know how to prevent this," she said.


Indiana woman goes to bat for Baby Houston Shae Kokomoor has never met the Schwartz family, yet she dedicates hours each day trying to help.

Shae Kokomoor couldn't get Houston Schwartz out of her head.

Kokomoor, 38, of Evansville, Ind., stumbled upon a post about the Springettsbury Township baby on Facebook in March. His father, Matt Schwartz, had written about trying to enroll the critically ill infant in a clinical study at Children's Hospital Boston.

Houston, 6 months old, has pulmonary vein stenosis, an often progressive and fatal condition. Schwartz, a father of four kids, said he lost his job shortly after Houston was born. The family lives in Schwartz's mother's basement.

Schwartz posted about his troubles of getting treatments approved through his insurance, and Kokomoor felt compelled to step in.

"This family needs help," she said. "This baby needs someone to go to bat for him."

Kokomoor started by calling and writing Schwartz's insurance company. She then called businesses in York County and Evansville.

She said it was difficult to convince people the family's story was true. However, many offered help.

Schwartz said he doesn't know what he would've done without the people who helped him, especially Kokomoor.

Though there's no cure for Houston's condition, Kokomoor hopes there's someone who can do something.

"Maybe there is a doctor out there who has an idea," she said. "Maybe there are other options available for treatment."

If not, she said, at least she tried to make the family's journey a little easier.

"I know that I'm doing what I'm supposed to be doing," Kokomoor said. "Nothing has ever felt more right."

--LEIGH ZALESKI, Daily Record/Sunday News