Down Syndrome Awareness Month - Stanford Medicine Children's Health Blog - Stanford Children's Health

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October 24, 2022 |

Preschooler With Down Syndrome Recovers Wonderfully From Open-Heart Surgery

Mom holding Emmett astatine  hospital

If there’s 1 happening that Sarah Lowry has learned from her preschooler, it’s the powerfulness of the quality tone to bash hard things and flooded challenges.

Her son, Emmett, 3 1/2, has Down syndrome. Down syndrome, different known arsenic trisomy 21, is caused by an other 21st chromosome. Children with Down syndrome often person different wellness complications, including bosom and breathing problems similar Emmett’s. Through each surgery, test, and treatment, Emmett has been brave, strong, and spirited, according to his mom.

“Emmett has taught maine that we tin bash hard things,” said Sarah, “along with a consciousness of loving others for who they are and empathy. He gives maine a large position connected accepting everyone for their differences.”

‘I americium smart. I americium strong. I americium brave’

The progressive small lad is learning motion connection portion waiting for connection skills to develop. “I’m teaching him to sign, ‘’I americium smart. I americium strong. I americium brave,’” said Sarah, illustrating the playful kid gestures that spell on with this affirmation.

Emmett’s latest trial of courageousness was open-heart country successful August 2022 to repair an atrial septal defect (ASD), a spread betwixt the close and near atria that was contiguous astatine birth. When the Lowrys were expecting, they knew their lad would request bosom country aft specialists diagnosed the ASD. After Emmett’s birth, the household waited for the cardiology squad to find erstwhile the clip was close for surgery.

“We thought helium would person a minimally invasive process to adjacent the spread done a catheter, but we aboriginal recovered retired that plans had changed, and it couldn’t beryllium done that way,” said Sarah. While galore ASDs tin beryllium repaired done a device, Emmett’s was excessively ample and required the accomplishment of Michael Ma, MD, a cardiothoracic surgeon astatine Stanford Medicine Children’s Health’s Betty Irene Moore Children’s Heart Center.

Nearly 50 percent of children with Down syndrome tin person an ASD, according to Emmett’s cardiologist, Michael Tran, MD, a Stanford Medicine Children’s Health provider, and with today’s precocious surgical techniques, it is usually easy repaired. These children often person bosom issues and different complications, including breathing problems and slumber apnea, mediocre musculus tone, oculus and receptor conditions, and learning disabilities.

ASD country is ‘one and done’

Emmett with dada  connected  country    day

Dr. Ma, with Lucile Packard Children’s Hospital Stanford, was referred to the Lowrys by Dr. Tran. After performing Emmett’s bosom country successful August 2022, which lasted astir 2 hours, Dr. Ma was pleased with however it went, calling it “one and done” for this benignant of bosom defect. “One bosom country volition repair an atrial septal defect,” Dr. Ma said. “In general, ASD patients won’t request to spell done aggregate surgeries successful their lifetime.

Prior to his ASD repair, Emmett underwent surgical absorption to close his precocious airway obstruction with the pediatric ENT Airway Team to optimize him for cardiac surgery. His airway was evaluated again preoperatively to springiness the bosom squad each the indispensable accusation needed to marque his postoperative betterment an casual process.

“The bosom country itself, for ASD, is straightforward, but the absorption required before, during, and aft the country for Emmett required the expertise of respective specialists due to the fact that of his Down syndrome. I’m arrogant that we are capable to supply this level of expertise astatine Stanford Medicine Children’s Health. Emmett’s lawsuit was smooth, with an fantabulous outcome, mostly acknowledgment to the galore radical progressive earlier and aft surgery,” Dr. Ma added.

Teamwork and multispecialty collaboration are a hallmark of Stanford Medicine Children’s Health, particularly astatine the Betty Irene Moore Children’s Heart Center, wherever galore analyzable pediatric bosom cases are treated. 

Dr. Ma added, “100,000 percent we’re 1 large collaborative team. All families travel to america with anxiety, which is to beryllium expected. It’s scary to consciousness a nonaccomplishment of control, handing your astir loved household subordinate to the attraction of others, particularly a kid with Down syndrome, wherever parents and caregivers are particularly committed.

“We person a squad that tin present large results and dainty a family’s anxieties. We person a therapeutic alliance. It’s not a doc sojourn that immoderate genitor ever wants to have. But we’re determination for them. And astatine the Betty Irene Moore Children’s Heart Center, we spot immoderate of the astir analyzable bosom cases successful the world, which makes the little analyzable bosom cases (like ASD) adjacent simpler.”

Learning that Emmett’s country would request to beryllium an open-heart country was not arsenic casual to header with, according to Sarah. “It was precise affectional and a batch to process, learning that your kid would request open-heart country and person his thorax cracked open.” As a pediatric nurse, Sarah good knew what this country entailed. She described it arsenic “the hardest happening we’ve had to spell through.”

“Emmett truly amazed us,” she added, with large alleviation successful her voice. “The bosom country went well, and we had a large acquisition astatine Stanford Medicine Children’s Health.”

Emmett near an content connected his bosom surgeon arsenic well: “He’s a lively young antheral who is afloat of life, and I’m grateful we could assistance him support his zest for life. This gives him a full beingness to beryllium arsenic zestful arsenic helium is. He’s a spirited child, and I emotion that astir him,” said Dr. Ma.

Recovery goes well

Emmett recovered good for six weeks, calling his 3-inch scar a “boo-boo.” “The worst portion was trying to support him from moving astir the location wanting america to pursuit him,” said his mom. He was good capable to precocious instrumentality to preschool with his 5-year-old sister, Hayden. When asked if helium was blessed to beryllium backmost successful school, helium signed, “Yes!” with the cutest smile.

Sarah shares Emmett’s communicative connected societal media, done photographs and amusive captions of his milestones: taking his archetypal steps, going connected a level trip, learning to stone successful a rocking chair, and different regular puerility developments. She has built a robust pursuing and established a nonprofit that supports children with disabilities. Sarah’s biggest privation is to rise consciousness for the challenges of raising a peculiar needs kid and to fto others cognize that emotion transcends immoderate disability.

“People are engaging with america connected societal media. They spot however good Emmett has done aft his open-heart country astatine Packard Children’s, and it gives them anticipation for their child. It’s large to assistance others successful this way,” said Sarah. Emmett likes to beryllium outside, provender the ducks, play successful the park, creation to music, bash h2o activities, and bent retired with his friends.

October marks Down Syndrome Awareness Month

Emmett backmost  to school

Sarah’s messaging is particularly important, arsenic October marks nationalist Down Syndrome Awareness Month. Her proposal successful a nutshell for parents: With large help, technology, and expertise from places similar Stanford Medicine Children’s Health, we tin bash hard things.

Knowing that Emmett’s squad included specialists successful some Down syndrome and bosom problems reassured her that his bosom country would spell well. “Dr. Ma was highly recommended, and we felt similar we were successful bully hands.” The surgical team, including the cardiac anesthesiologist, met with the Lowrys to reply questions and connection further assurance. Emmett’s ear, nose, and pharynx specialists acceptable him with a breathing apparatus anterior to country truthful that administering anesthesia would spell smoothly.

“When you get a diagnosis for your kid and there’ll beryllium other wellness concerns, there’s a batch of fearfulness with that,” she said. “I emotion sharing my story. You’re ne'er guaranteed health. I emotion letting parents cognize that you’re going to emotion your kid nary substance what, and you’ll person the grace to get done the hard things.”

Learn much astir Stanford Medicine Children’s Health’s heart care for children with elemental to analyzable bosom conditions.

Resources for patients with Down Syndrome:

National Down Syndrome Society 

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

Down Syndrome Research Center astatine Stanford University

Down Syndrome Connection of the Bay Area

Silicon Valley Down Syndrome Network

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