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Down Syndrome Awareness Month – Stanford Medicine Kids Health BlogHealthier, Happy Lives Blog

Preschooler With Down Syndrome Recovers Wonderfully From Open-Heart Surgery

If there’s one thing Sarah Lowry learned from her preschooler, it’s the power of the human spirit to do tough things and overcome challenges.

His son, Emmett, 3 1/2, has Down syndrome. Down syndrome, otherwise known as trisomy 21, is caused by an extra chromosome 21. Children with Down syndrome often have other health complications, including heart and respiratory problems like Emmett’s. Through every Surgery, testing and treatmentEmmett was brave, strong and fiery, according to his mother.

“Emmett taught me that we can do difficult things,” Sarah said, “with a sense of loving others for who they are and empathy. He gives me a great perspective on accepting each other. for its differences.

‘I’m smart. I am strong. I am courageous’

The active little boy is learning sign language while waiting for his language skills to develop. “I teach him to sign: ‘I am intelligent. I am strong. I am brave,” Sarah said, illustrating the playful child gestures that accompany this affirmation.

Emmett’s last test of courage was open-heart surgery in August 2022 to repair a atrial communication (ASD), a hole between the right and left atria that was present at birth. When the Lowrys were pregnant, they knew their son would need heart surgery after specialists diagnosed him with ASD. After Emmett was born, the family waited for the heart team to figure out when the surgery was right.

“We thought he would have a minimally invasive procedure to close the hole through a catheter, but later found out plans had changed and it couldn’t be done that way,” Sarah said. While many ASDs can be fixed with a device, Emmett’s was too big and required the skill of Michael Ma, MDcardiothoracic surgeon Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health.

According to Emmett’s cardiologist, nearly 50% of children with Down syndrome may have ASD. Michael Tran, MD, a Stanford Medicine Children’s Health provider, and with today’s advanced surgical techniques, it is usually easily repaired. These children often have heart problems and other complications, including breathing problems and sleep apnea, low muscle tone, eye and hearing problems, and learning disabilities.

ASD surgery is “one and done”

Emmett with dad on surgery day

Dr. Ma, from Stanford’s Lucile Packard Children’s Hospital, was referred to Lowrys by Dr. Tran. After performing Emmett’s heart surgery in August 2022, which took around two hours, Dr. Ma was happy with how it went, calling it “one and done” for this type of heart defect. “Cardiac surgery will repair an atrial septal defect,” Dr. Ma said. “In general, patients with ASD will not need multiple surgeries in their lifetime.

Prior to his ASD repair, Emmett underwent surgical management to correct his upper airway obstruction with the pediatric ENT airway team to optimize it for cardiac surgery. His airways were reassessed before the operation to give the cardiac team all the information needed to facilitate his postoperative recovery.

“The heart surgery itself, for ASD, is simple, but the management required before, during and after Emmett’s surgery required the expertise of multiple specialists due to his Down syndrome. I am proud that we let’s be able to provide that level of expertise to Stanford Medicine Children’s Health. Emmett’s case went smoothly, with an excellent outcome, thanks in large part to the many people involved before and after the surgery,” added the Dr Ma.

Teamwork and multi-specialty collaboration are hallmarks of Stanford Medicine Child Healthparticularly at the Betty Irene Moore Children’s Heart Center, where many complex pediatric cardiac cases are treated.

Dr Ma added: “100,000% we are a great collaborative team. All the families come to us with anxiety, which is normal. It is frightening to feel a loss of control, to entrust your most beloved family member to the care of others, especially a child with Down syndrome, where parents and caregivers are especially committed.

“We have a team that can deliver great results and deal with a family’s anxieties. We have a therapeutic alliance. It’s not a trip to the doctor that any parent wants to have. But we are there for them. And at Betty Irene Moore Children’s Heart Centerwe see some of the most complex cardiac cases in the world, which makes less complicated cardiac cases (like ASD) even simpler.

Learning that Emmett’s surgery had to be open-heart surgery wasn’t as easy to deal with, according to Sarah. “It was very emotional and a lot to process, learning that your child would need open heart surgery and his chest would be cut open.” As a pediatric nurse, Sarah knew very well what this operation entailed. She described it as “the hardest thing we’ve had to go through”.

“Emmett really surprised us,” she added, with great relief in her voice. “The heart surgery went well and we had a great experience at Stanford Medicine Children’s Health.”

Emmett also left an impression on his cardiac surgeon: “He is a lively and lively young man, and I am grateful that we were able to help him maintain his zest for life. It gives him a lifetime to be as enthusiastic as him. He’s a spirited kid, and I like that about him,” Dr Ma said.

The recovery is going well

Emmett recovered well for six weeks, calling his 3-inch scar a “boo-boo”. “The worst part was trying to stop him from running around the house wanting us to chase him,” his mother said. He was well enough to recently return to kindergarten with his 5-year-old sister, Hayden. When asked if he was happy to be back in school, he signed “Yes!” with the cutest smile.

Sarah shares Emmett’s story on social media, through photographs and fun captions of his milestones: taking his first steps, getting on a plane, learning to rock in a rocking chair and other routine developments from childhood. She built a strong following and started a non-profit organization that supports children with disabilities. Sarah’s greatest wish is to raise awareness of the challenges of raising a child with special needs and to let others know that love transcends any disability.

“People interact with us on social media. They see how well Emmett did after his open heart surgery at Packard Children’s, and it gives them hope for their child. It’s great to help others in this way,” said Sarah. Emmett loves being outdoors, feeding the ducks, playing in the park, dancing to music, doing water activities and spending time with his friends.

October marks Down Syndrome Awareness Month

Emmett goes back to school

Sarah’s message is especially important as October marks National Down Syndrome Awareness Month. His short advice for parents: With great help, technology and expertise from places like Stanford Medicine Children’s Health, we can do the hard stuff.

Knowing that Emmett’s team included Down syndrome and heart specialists reassured her that her heart surgery would go well. “Dr. Ma came highly recommended and we felt in good hands.” The surgical team, including the cardiac anesthesiologist, met with the Lowrys to answer questions and offer additional reassurance.Emmett’s otolaryngologists fitted him with a breathing machine before the operation so that the anesthesia is going smoothly.

“When you get a diagnosis for your child and there are additional health issues, there’s a lot of fear with that,” she said. “I love sharing my story. Your health is never guaranteed. I love letting parents know that you are going to love your child no matter what, and you will have the grace to get through the tough times.

Learn more about Stanford Medicine Children’s Health’s heart care for children with simple to complex heart disease.

Resources for patients with Down syndrome:

National Down Syndrome Society

The Center for Down Syndrome at Stanford Medicine Children’s Health

Down Syndrome Research Center at Stanford University

Bay Area Down Syndrome Connection

Silicon Valley Down Syndrome Network