Eisenmenger Syndrome: Background, Pathophysiology, Etiology
Born With A Heart Defect, Baby Soon Had Seizures, Stroke And More
Amber Noggle's first pregnancy ended in a miscarriage. After that, it was a struggle for her and Dustin Serbin to conceive again.
So when they found out Amber was pregnant again after years of trying, they were elated. They did early testing to find out the gender and started a list of potential names.
Walking into their 20-week ultrasound, Amber and Dustin were excited to see their baby boy for the first time. Halfway through the appointment, the sonographer asked Amber to walk around the office a bit to reposition the baby. When she got back to the room, a more senior sonographer arrived to take a closer look at the ultrasound.
Amber felt the atmosphere shift. Her anticipation turned into anxiety.
Something isn't right with our baby, she thought.
A perinatologist, an OB-GYN who specializes in high-risk pregnancies, was called into the room. The doctor sat with Amber and Dustin to deliver the news. Their son would be born with tetralogy of Fallot, a congenital heart defect that's actually four different issues at once.
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In those first few days after the ultrasound, they grieved "the loss of a normal pregnancy," Amber said. They understood their son's diagnosis would bring challenges and braced for what those might be.
The night after Dax Serbin was born in Madison, Wisconsin, he stopped breathing. An alarm went off, and doctors rushed into the room. They quickly hooked him up to a ventilator.
A couple days later, Dax developed an infection around his heart. Then he began having seizures. And a stroke.
Beyond the obvious dangers of each episode, the series of setbacks caused another complication. They delayed Dax from undergoing an operation to correct his heart problems.
Dax was finally healthy enough for surgery at 11 days old.
It worked. Doctors repaired all four heart problems.
Dax spent a month recovering in the hospital. He continued seeing a cardiologist for his heart and a neurologist to make sure his brain was developing properly post-stroke.
Now 5, Dax has met every milestone – from sitting up to walking and talking. He's growing and developing exactly how he should be. Since his dramatic start to life, he's known nothing but normalcy.
As a kindergartner, he's able to play sports (his favorites are baseball and soccer) and run around the school playground with no restrictions.
He also understands some of his own story. He knows the scar on his chest is from being cut into by doctors, and he happily tells people about it. "He's going to be a remarkable kid with quite the story to share," Amber said.
"Dax is a dynamo," said his cardiologist, Dr. Carter Ralphe. "His history of congenital heart disease certainly is not holding him back in any way."
While Dax was in the hospital, Amber and Dustin were taught infant CPR and received an Infant CPR Anytime training kit to take home.
Three years ago, Amber, a TV anchor, and Dustin wanted to do something to give back. They launched a campaign to raise funds to buy CPR Anytime kits, with help from the American Heart Association. They wound up purchasing 211 that were donated to families at the hospital where Dax received his care, as well as neonatal intensive care units at other Madison-area hospitals.
When they were ready to consider adding another child to the family, Amber and Dustin did genetic testing to ensure there was no genetic link to Dax's heart condition. When the test came back negative, they felt more at ease and became pregnant quickly after.
Throughout most of the pregnancy, Amber felt anxious, even though all the tests and checkup appointments went smoothly. They even did a fetal echocardiogram to make sure their baby's heart was OK. But until she could see him face-to-face and know he was healthy, Amber was scared.
On the day Xander was born, she finally breathed a sigh of relief.
And for Dax, his little brother is just one more person he can share his heart story with.
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
covers heart and brain health. Not all views expressed in this story reflect the official position of the American Heart Association. Copyright is owned or held by the American Heart Association, Inc., and all rights are reserved.
6-year-old Was Born With A Heart Defect. Here's What Her Parents Tell Her Every Night.
When Stephanie Jenness found out she was pregnant with her third child, she and her husband, Dan, were ecstatic. They started preparing for life as a family of five, even purchasing a minivan. Stephanie's pregnancy was mostly smooth. There was a brief scare when a test showed a possible problem with the baby's chromosomes. However, that turned out to be a false alarm. And when baby Corey arrived at a hospital in Rhode Island, she passed all the newborn screenings, despite weighing only 4 pounds, 11 ounces. In the maternity ward, Stephanie was enjoying some snuggles and early bonding with Corey when a nurse visited them. The nurse noticed Corey's gums and nailbeds were blue. She took the newborn to the nursery for further observation. Soon, Stephanie was being wheeled into a conference room. Doctors broke the news: Corey was born with tetralogy of Fallot with pulmonary atresia – a complex congenital heart defect. Four hours ago, her baby was healthy, Stephanie thought to herself. But now, Corey needed to be transferred to a hospital in Boston. Stephanie and Dan looked at their helpless infant in her hospital cot, wearing a tiny outfit with a pumpkin hat. (It was October 2017.) All they could do was cry, pray and hope for the best. Corey had her first open-heart surgery at 5 days old. It took a month for her to be healthy enough to go home. What should've been a milestone wasn't. Corey was soon drinking less and sleeping more. By the time Stephanie and Dan took her back to the hospital, her oxygen level was dangerously low. Both these issues stemmed from her needing a new pulmonary valve. Because she wasn't eating well, Corey was put on a feeding tube. Her low oxygen resulted in her being hooked up to oxygen full time. Corey was on both a feeding tube and oxygen from January until August 2018. That's when her medical team said she'd need another heart surgery to put a valve in. The surgery made a huge difference. Corey began showing interest in food, laughing and babbling to her brothers, Wyatt and Jacob. Corey's improvement was so profound that Stephanie and Dan felt like they were no longer in "survival mode." "Over the years, as Corey starts to acknowledge and understand that she has a heart condition and she's different, she's proud of her scar," Stephanie said. Now 6, Corey wakes up every day to a photo of herself on her bedroom wall. In it, she's in a hospital cot with a hole in her chest and tubes and bandages galore. "They fixed my heart," Corey said. That strong heart is something Corey and her parents think about every night. After putting on her favorite pajamas, brushing her teeth and crawling into bed for one of her favorite bedtime stories – picture books about heart defect survivors – Corey hears affirmations from the ones who love her most. "We always say at nighttime during prayers, 'You are strong, you are brave, you are beautiful, you are powerful,'" Stephanie said. "She knows she's different from her peers, but she's still a strong and powerful little girl. I want her to always know that. I don't ever want her to see her heart defect as a disability; I want her to use it as a strength." Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.Jimmy Kimmel Says Son Billy Is 'Doing Great' In Birthday Tribute 7 Years After Open Heart Surgery
Jimmy Kimmel. Bruce Glikas/WireImageJimmy Kimmel offered a major health update to celebrate son Billy's 7th birthday and thanked medical professionals in the process.
"Billy turns 7 today and is doing great thanks to the doctors, nurses, therapists and staff at @ChildrensLA & @CedarsSinai," Kimmel, 56, captioned an Instagram post on Sunday, April 21. "Billy is asking friends 'to give $7 because I'm seven to help kids in the hospital.' (he also wants a spy kit) His goal is 'to raise $100 to help sick kids.' If you'd like to donate – thank you and link in bio."
The photos accompanying his birthday message showed Billy with what appeared to be his foot in Kimmel's camera. A second image showed the talk show host's youngest child wearing a Los Angeles Lakers jersey and holding a basketball while smiling.
Kimmel has detailed his son's health struggles since wife Molly McNearney gave birth to Billy in April 2017. Kimmel returned to Jimmy Kimmel Live! The following month with an emotional monologue revealing that Billy had been born with a rare congenital heart defect.
Billy's official diagnosis was "tetralogy of fallot with pulmonary atresia," which means his pulmonary valve was blocked and there was a hole in his heart. Three hours after Billy was born, he started to turn purple and doctors noticed he had a heart murmur.
"Dr. Vaughn Starnes opened his chest and fixed one of the two defects in his heart. He went in there with a scalpel and did some kind of magic that I couldn't even begin to explain," Kimmel said at the time. "He opened the valve, and the operation was a success. It was the longest three hours of my life."
Kimmel and McNearney, 46, also share daughter, Jane, 9. Additionally, the television host shares daughter Katie, 32, and son Kevin, 30, with ex-wife Gina Kimmel.
Jimmy Kimmel's cuties! The talk show host shares two children with wife Molly McNearney and loves spending time with the little ones. The Jimmy Kimmel Live! Host was previously married to Gina Kimmel, and they became parents in 1991 when daughter Katherine arrived, followed by son Kevin two years later. The former couple called it […]
Kimmel told Us Weekly that Billy was "doing great" in September 2019, two years after his heart surgery.
"He thinks he's Spider-Man now, so we're safe from crime," Kimmel joked at the time. "He wears the costume all the time. He's shooting webs all over the house."
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The ABC star continued, "He goes to preschool as his secret identity and then turns into Spider-Man when he comes home."
The following year, Kimmel and McNearney showed video footage of Billy's entire health journey on his show.
"We're two weeks away from the election, and there is so much more than the election on the line. I want to bring us back to focus on something we can't afford to forget, [which] is healthcare," he said at the time. "My wife made a video that deals with our experience when it comes to preexisting conditions. We'd like you to watch this and pass it around to anyone who may have forgotten what this election is about."
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