Harrowing crisis sparks woman to action

AMBRIDGE, Pa. (AP) – Fingertips of her index and middle fingers rhythmically compress his tiny chest.

“Ah, ha, ha, ha, stayin’ alive, stayin’ alive.”

Her baby, just several days shy of 9 months, isn’t breathing. He’s in cardiac arrest.

“Ah, ha, ha, ha, stayin’ alive.”

Color drains from plump, rosy cheeks. Lips turn blue. Tiny body goes limp.

“Ah, ha, ha, ha, stayin’ alive, stayin’ alive.”

Bridget Rohm is scared. Tears spill from her eyes. Though frantic, she focuses.

Now’s not the time to panic. Every second counts.

“Mama Bear” instinct kicks in.

She presses hard, fast on her baby’s chest.

The Ambridge mom’s thankful she took an infant CPR class.

“Ah, ha, ha, ha, stayin’ alive, stayin’ alive.”

Thump-thump-thump-thump.

The repetitive drum loop of “Stayin’ Alive” – the Bee Gees’ classic song from “Saturday Night Fever” – pulses at 103 beats per minute, close to the 100 chest compressions per minute recommended by the American Heart Association when performing CPR.

“Ah, ha, ha, ha, stayin’ alive, stayin’ alive.”

It plays over and over and over in her head.

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‘Something was seriously wrong’

Clutter everywhere in the small apartment. Cheerful trappings of a newborn. Cuddly teddy bears. Plush elephants. Stuffed dogs. Storybooks. Colorful mobile spinning above a baby swing.

And something else. Jarring, actually.

An IV pole. Two fluid bags and a stethoscope hang from it. Snakelike, plastic tubing, too. One delivers constant oxygen. Another meds, nutrition and fluids pumped to a gastrostomy tube, also called a G-tube, directly into little Rycker Rohm-Deceder’s stomach. A monitor assesses oxygen saturation and heart rate.

This isn’t what Rohm, 26, imagined for her son, her first child.

She knew she was having a boy. Named him Rycker – a strong name, one she chose having watched a documentary series on TV’s A&E; network – before he was born.

Rycker would grow up to be strong, independent, successful.

“I mapped out his life for him,” Rohm said, while he was still in her womb. “I was all prepared to have a typical baby.”

A sonogram at 22 weeks confirmed her plan for “a healthy, baby boy,” she said.

Two weeks later, however, a fetal anatomy scan, a more detailed ultrasound to measure growth and development – face, brain, skull, spine, heart, limbs – revealed anomalies.

Lying on an ultrasound table, Rohm thought the scan was taking longer than it should. The technician commented that Rycker’s limbs were short, but Rohm thought nothing of it. She and fiancé Jeff Deceder aren’t statuesque.

Were there heart ailments in her family?

Rohm’s parents both died of heart attacks; she had a heart murmur.

“Why is she asking me this?” Rohm wondered.

A doctor wanted a closer look at Rycker’s heart. A fetal echocardiogram was scheduled a few weeks later.

Rohm asked for results.

“We’ll talk about it in the office,” the physician said.

“I knew at that point something was seriously wrong,” Rohm said.

In that room, walls closed in.

The diagnosis: Rycker had two holes between left and right heart chambers; valves controlling blood flow also weren’t developed. The fancy name, Rohm said, is atrioventricular septal defect. Each year, about 2,000 babies – 1 in 2,120 – are born with AVSD, estimates the Centers for Disease Control and Prevention.

Rycker would need open-heart surgery, possibly immediately after birth.

But that wasn’t all.

He also has pulmonary hypertension – high blood pressure in arteries in his lungs and right side of the heart.

And it appeared Rycker had aortic coarctation, a narrowing of the large blood vessel branching off the heart, which would cause it to pump harder to force blood through the body.

The final blow: Meet with a genetic counselor.

Heart defects like Rycker’s often are common in babies with trisomy 21, abnormal cell division involving chromosome 21 more commonly known as Down syndrome.

Forty percent of all children with Down syndrome have congenital heart disease; of those, 40 percent have AVSD, according to secondscount.org.

A sample of Rohm’s amniotic fluid – fluid surrounding the fetus in the uterus – confirmed what the genetic counselor suspected.

“I remember her calling,” Rohm said. “‘I’m sorry. Your son has trisomy 21.’”

Immediately, Rohm asked if she had done something to cause it, but was told “it was completely random.”

Emotions overwhelmed her – “probably some a mother shouldn’t have. I grieved the child that I was planning for; the one that I had imagined; the one that would grow up to be independent,” she said.

Now, she feels “silly” for thinking such.

Having immersed herself in the Down syndrome community, she’s seen so many children “grow up to be independent, get married, have jobs, graduate from high school, graduate from college, have their own businesses so I’m not as worried anymore.”

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A difficult labor

July 19, Rohm was scheduled for induced labor at Magee-Womens Hospital of UPMC in Pittsburgh. Blood flow from umbilical cord to placenta was abnormal.

Labor was difficult – 12 hours.

Rohm planned to deliver naturally; it was not to be.

Contractions, now a minute apart, caused Rycker’s heart rate to decelerate with each one. Doctors were concerned for both mother and baby.

At 6:20 a.m., “everything got crazy,” Rohm said. “Tons of doctors came rushing in.”

Deceder remembered personnel “dragging her bed away, dressing me in a hospital gown, running us down the hall.”

Rohm received an epidural and within 4 minutes, Rycker was delivered via cesarean section.

“They brought him by her for 2 seconds,” Deceder said, before whisking him away to the neonatal intensive care unit. His heart rate kept dropping.

Within two hours, the 4-pound-9-ounce baby was transferred to Children’s Hospital of Pittsburgh of UPMC where he spent the next 16 days.

“I saw him right before they transported him – about 5 to 10 minutes. He was hooked up to all kinds of machines. I could barely see him. I did touch his hand,” Rohm said.

The good news: The aortic narrowing wasn’t as bad as initially thought, Rohm said. But Rycker would still need to have open-heart surgery to repair those holes.

The plan was to let him grow a few months.

“The bigger he got the better the surgery would go,” Deceder said.

Surgery happened Jan. 9. About a month later, another surgery to insert a G-tube with Nissen (anti-reflux procedure).

“He was having trouble taking a bottle,” Rohm said, because of a swollen airway and thus not getting enough to eat. And he was also at risk for aspirating.

Parents hope within a few years, the G-tube can be reversed.

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‘In God’s hands’

Rycker awakened from a nap around 3 p.m. April 9. He fussed.

Rohm tried giving him a bottle, but he cried – cried uncontrollably.

“That’s unlike him,” Rohm said. “He’s a very happy baby. He never gets like that. I knew something’s wrong.”

She picked him up. Tried to console him.

“He turned blue. His whole body. His face, his lips, his legs, his feet – everything. I remember him looking up at me with the blackest eyes. The only way I can think to describe it is like the devil was in him. His eyes were big and black and he looked scared.”

Rycker wasn’t breathing. His body went limp in his mother’s arms.

She nudged his chest. No response.

“I went into Mama Bear action,” Rohm said. “I put him on the floor and started doing compressions. I felt like I did them forever.”

Within two or three minutes, she estimated, Rycker wailed.

“It was the best sound. I never thought I’d be so happy to hear a baby wailing.”

Rohm called 911; called Deceder.

Rycker’s legs were still blue and he wasn’t fully alert, she said.

Police arrived first; then an ambulance crew.

His heart rate was low; lower half of his body limp.

Rycker, transported to Children’s Hospital, was admitted for four days.

Doctors attributed the episode to “pulmonary hypertension crisis,” Rohm said.

Heart and lungs work together to deliver oxygenated blood to the heart; return oxygen-depleted blood to the lungs. Pulmonary blood pressure is the pressure exerted to pump blood from the heart through lung arteries. High pulmonary pressure causes the heart to work harder.

Vessels leading to Rycker’s lungs aren’t fully developed, Deceder said, causing pressure to build up in the right side of the heart.

“They just seized up and closed up because the pressure was too high, which stopped his lungs, which stopped his heart,” he said.

Rycker’s pulmonary pressure is about the highest pediatric cardiologists at Children’s have seen, Deceder said.

The condition is being treated with medication, but if it doesn’t improve, Rycker may need a heart-lung transplant, something the couple doesn’t want to consider.

“The survival rate is too low,” Rohm said. “We just keep praying and put it in God’s hands.”

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‘So much joy’

Rohm picks up her little bundle dressed in a red T-shirt. She wears one, too, part of the couple’s “I Wear Red for Rycker” awareness campaign.

“You are my sunshine, you are my sunshine, you make me happy when skies are gray,” she coos.

And he is.

It wasn’t random, Rohm said, that her son was born with Down syndrome.

“God chose me to be Rycker’s mommy and chose me to help educate others to be a voice, not just for Rycker, but all those with Down syndrome and heart defects.”

Deceder agreed.

“He was meant to be ours.”

While acknowledging that caring for a child like Rycker is “the hardest thing we’ve ever done,” Deceder and Rohm know they aren’t alone. They’re surrounded by a supportive and loving community that stretches around the globe.

Two months after Rycker’s birth, Rohm started blogging: “Rycker: The Ups and Downs.”

“At first, it was a way, I guess, to update my family, really tell our story, his diagnosis story and everything. I had no idea it would have grown to be as big as it is.”

Deceder pulls a stack of get-well and e-cards – he estimates at 1,000 – from “Greece, Germany, Singapore, Philippines, South Africa, Brazil, all over,” Rohm said, including the United States. And gifts, too. A crocheted, red blanket, stuffed toys, a “God Bless Rycker’s Heart” plaque.

“Total strangers,” she said.

The couple calls them “Rycker’s Heart Heroes” and to honor them, created a non-profit foundation to give back.

Rycker’s Heart Heroes Foundation gives support to and raises awareness for families affected by congenital heart disease by providing care packages to families during a hospital stay, Rohm said.

Part of the foundation also includes the Rycker Roo Project that supplies mamaRoos to pediatric cardiac intensive care units at Children’s Hospital, and soon to Cook Children’s Medical Center in Fort Worth, Texas, which reached out to the couple.

Postoperatively, Rycker was in a lot of pain and discomfort.

“We tried everything,” Rohm said. “Holding him, patting him, rocking him. Nothing worked.”

Nothing, except a mamaRoo, an infant seat with gentle up-and-down and side-to-side motions designed by 4moms, a consumer technology company headquartered in Pittsburgh.

“In 10 minutes, he fell right to sleep,” Rohm said.

Monetary donations will help buy new mamaRoos for hospitals, but the couple also seeks gently used mamaRoos from families whose children have outgrown them to give to other families with children affected by CHD.

Rohm said a seat costs around $250.

“A lot of families, after a hospital stay, can’t afford that,” she said.

So far, 10 new and used seats have been donated through the foundation, Rohm said.

When 4moms heard about the project, the company wanted to help, Rohm said. And so, every mamaRoo purchased for the Rycker Roo Project through the company’s website will receive a 30 percent discount.

Monetary donations can be made at ryckersheartheroes.org.

The couple plans a benefit spaghetti dinner from noon to 6 p.m. June 10 in the social hall of Good Samaritan Parish on Glenwood Avenue in Ambridge.

And Rohm advocates that all parents learn CPR.

Rycker is a blessing, Rohm said, who has “taught me so much.”

She called him “just perfect.”

“Look at him,” Deceder said, smiling at his son.

“So much joy. This is him all the time. We were blessed. He laughs all the time. He smiles with his infectious smile all the time. Those two hang out all the time. Just happy.”

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Online:

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Information from: Altoona Mirror, //www.altoonamirror.com

Copyright © 2018 The Washington Times, LLC.

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