Down Syndrome Awareness Month

Preschooler With Down Syndrome Recovers Wonderfully From Open-Heart Surgery

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

Her son, Emmett, 3 1/2, has Down syndrome. Down syndrome, otherwise known as trisomy 21, is caused by an extra 21st chromosome. Children with Down syndrome often have other health complications, including heart and breathing problems like Emmett’s. Through every surgery, test, and treatment, Emmett has been brave, strong, and spirited, according to his mom.

“Emmett has taught me that we can do hard things,” said Sarah, “along with a sense of loving others for who they are and empathy. He gives me a great perspective on accepting everyone for their differences.”

‘I am smart. I am strong. I am brave’

The active little boy is learning sign language while waiting for language skills to develop. “I’m teaching him to sign, ‘’I am smart. I am strong. I am brave,’” said Sarah, illustrating the playful kid gestures that go along with this affirmation.

Emmett’s latest test of courage was open-heart surgery in August 2022 to repair an atrial septal defect (ASD), a hole between the right and left atria that was present at birth. When the Lowrys were expecting, they knew their son would need heart surgery after specialists diagnosed the ASD. After Emmett’s birth, the family waited for the cardiology team to determine when the time was right for surgery.

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

Nearly 50 percent of children with Down syndrome can have an ASD, according to Emmett’s cardiologist, 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 issues and other complications, including breathing problems and sleep apnea, poor muscle tone, eye and ear conditions, and learning disabilities.

ASD surgery is ‘one and done’

Dr. Ma, with Lucile Packard Children’s Hospital Stanford, was referred to the Lowrys by Dr. Tran. After performing Emmett’s heart surgery in August 2022, which lasted about two hours, Dr. Ma was pleased with how it went, calling it “one and done” for this type of heart defect. “One heart surgery will repair an atrial septal defect,” Dr. Ma said. “In general, ASD patients won’t need to go through 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 him for cardiac surgery. His airway was evaluated again preoperatively to give the heart team all the necessary information needed to make his postoperative recovery an easy process.

“The heart surgery itself, for ASD, is straightforward, but the management required before, during, and after the surgery for Emmett required the expertise of several specialists because of his Down syndrome. I’m proud that we are able to provide this level of expertise at Stanford Medicine Children’s Health. Emmett’s case was smooth, with an excellent outcome, largely thanks to the many people involved before and after surgery,” Dr. Ma added.

Teamwork and multispecialty collaboration are a hallmark of Stanford Medicine Children’s Health, especially at the Betty Irene Moore Children’s Heart Center, where many complex pediatric heart cases are treated. 

Dr. Ma added, “100,000 percent we’re one big collaborative team. All families come to us with anxiety, which is to be expected. It’s scary to feel a loss of control, handing your most loved 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 treat a family’s anxieties. We have a therapeutic alliance. It’s not a doctor visit that any parent ever wants to have. But we’re there for them. And at the Betty Irene Moore Children’s Heart Center, we see some of the most complex heart cases in the world, which makes the less complicated heart cases (like ASD) even simpler.”

Learning that Emmett’s surgery would need to be an open-heart surgery was not as easy to cope with, according to Sarah. “It was very emotional and a lot to process, learning that your child would need open-heart surgery and have his chest cracked open.” As a pediatric nurse, Sarah well knew what this surgery 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 left an impression on his heart surgeon as well: “He’s a lively young man who is full of life, and I’m grateful we could help him maintain his zest for life. This gives him a whole lifetime to be as zestful as he is. He’s a spirited child, and I love that about him,” said Dr. Ma.

Recovery goes well

Emmett recovered well for six weeks, calling his 3-inch scar a “boo-boo.” “The worst part was trying to keep him from running around the house wanting us to chase him,” said his mom. He was well enough to recently return to preschool 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, going on a plane trip, learning to rock in a rocking chair, and other routine childhood developments. She has built a robust following and established a nonprofit that supports children with disabilities. Sarah’s biggest wish is to raise awareness for the challenges of raising a special needs child and to let others know that love transcends any disability.

“People are engaging with us on social media. They see how well Emmett has done 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 likes to be outside, feed the ducks, play in the park, dance to music, do water activities, and hang out with his friends.

October marks Down Syndrome Awareness Month

Sarah’s messaging is especially important, as October marks national Down Syndrome Awareness Month. Her advice in a nutshell for parents: With great help, technology, and expertise from places like Stanford Medicine Children’s Health, we can do hard things.

Knowing that Emmett’s team included specialists in both Down syndrome and heart problems reassured her that his heart surgery would go well. “Dr. Ma was highly recommended, and we felt like we were in good hands.” The surgical team, including the cardiac anesthesiologist, met with the Lowrys to answer questions and offer further assurance. Emmett’s ear, nose, and throat specialists fit him with a breathing apparatus prior to surgery so that administering anesthesia would go smoothly.

“When you get a diagnosis for your child and there’ll be extra health concerns, there’s a lot of fear with that,” she said. “I love sharing my story. You’re never guaranteed health. I love letting parents know that you’re going to love your child no matter what, and you’ll have the grace to get through the hard things.”

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

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

Down Syndrome Connection of the Bay Area

Silicon Valley Down Syndrome Network