Down Syndrome Awareness Month – Stanford University Medical School Children’s Health Blog

A preschooler with Down Syndrome makes a remarkable recovery from open heart surgery

My mom holds Emmett in the hospital

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

Her son Emmett, 3 1/2, has Down’s syndrome. Down syndrome, otherwise known as trisomy 21, is caused by the presence of an extra chromosome 21. Children with Down syndrome often have other health complications, including heart and breathing problems like Emmett’s. through each Surgery, testing and treatmentEmmett was brave, strong, and energetic, according to his mother.

Sarah said, “Emmett taught me that we can do difficult things, along with feeling love and empathy for others. It gives me a great perspective on accepting everyone who is different.”

‘I am intelligent. I’m strong. I am brave’

An active young child learns sign language while waiting for language skills to develop. I teach him to sign, I’m smart. I’m strong. Sarah said, showing the child’s playful gestures that go along with that affirmation.

The last test of courage Emmett performed was open heart surgery in August 2022 to fix a disease 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 an ASD. After Emmett’s birth, the family waited for the cardiology team to determine the appropriate time for surgery.

“We thought he was going to have minimally invasive surgery to close the hole through a catheter, but we later found out that plans had changed, and it can’t be done that way,” Sarah said. While many ASDs can be repaired with a machine, Emmett was very large and required skill Michael Ma, MDcardiac surgeon at Betty Erin Moore Pediatric Heart Center of Children’s Health at Stanford Medicine.

Roughly 50 percent of children with Down syndrome can have an autism spectrum disorder, according to Emmett cardiologist. Michael Tran, MDD., a pediatric health services provider at Stanford Medicine, and with today’s advanced surgical techniques, it usually repairs easily. These children often have heart problems and other complications, including breathing problems, sleep apnea, poor muscle tone, eye and ear diseases, and learning disabilities.

ASD surgery ‘single and finished’

Emmett with dad on the day of surgery

Dr. Ma was referred, with Lucille Packard Hospital for Children at Stanford, to Lowrys by Dr. Tran. After Emmett’s heart operation in August 2022, which took about two hours, Dr. Ma was pleased with the way the operation went, calling it a “one and done” for this type of heart defect. “One heart surgery will fix an atrial septal defect,” said Dr. Ma. “In general, ASD patients will not need to undergo multiple surgeries in their lifetime.

Prior to the ASD repair, Emmett underwent surgical management to correct upper airway obstruction with the pediatric otolaryngology team to improve cardiac surgery. His airway was evaluated again before surgery to give the cardiac team all the necessary information needed to make his postoperative recovery easy.

“Cardiac surgery itself, for ASD, is simple, but the management required before, during and after surgery requires the expertise of many specialists due to Down syndrome. I am proud to be able to provide this level of expertise at Stanford Medicine for Children’s Health. Emmett’s case,” Dr. Ma added, It was smooth, and the result was excellent, thanks in large part to the many people involved before and after the surgery.

Teamwork and multidisciplinary cooperation are the hallmark of Children’s Health at Stanford Medicineespecially at Betty Erin Moore’s Children’s Heart Center, where many complex pediatric heart conditions are treated.

Dr. Ma added, “100,000 percent we are a great collaborative team. All families come to us with anxiety, which is to be expected. It is scary to feel out of control, handing your beloved family members over to the care of others, especially a child with Down syndrome, to which parents and caregivers are especially committed .

“We have a team that can deliver great results and address family concerns. We have a therapeutic alliance. It’s not the doctor visit any parent would want. But we are there for them. And at Betty Erin Moore Pediatric Heart Center, we see some of the most complex heart conditions in the world, making less complex heart conditions (such as ASD) simpler. “

According to Sarah, knowing that Emmett’s surgery had to be open heart surgery was not easy to handle. “He was very emotional and there was a lot of processing, knowing that your child would need open-heart surgery with his chest open.” As a pediatric nurse, Sarah knew very well 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 have a great experience with children’s health at Stanford Medicine.”

Emmett made an impression on his heart surgeon as well: “He’s such a lively, full of life young man, and I’m thankful we were able to help him keep him motivated for life. This gives him a lifetime to be as fun as he is. He’s such a lively kid, and I love that in him,” said Dr. Ma. .

Recovery is going well

Emmett recovered well for six weeks, describing his 3-inch scar as “boo boo.” “The worst part was trying to stop him from running around the house asking us to chase him,” his mother said. He was good enough to recently go back 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 most beautiful smile.

Sarah shares Emmett’s story on social media, with photos and fun comments about his milestones: taking his first steps, going on a plane ride, learning to play in a rocking chair, and other childhood routines. She has built a strong following and created a non-profit organization that supports children with disabilities. Sarah’s biggest desire 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 is doing after Packard Pediatric open heart surgery, and it gives them hope for their child. “It’s great to help others in this way,” Sarah said. Emmett loves to be outside, feed ducks, play in the garden, dance to music, do water activities, and hang out with his friends.

October is Down Syndrome Awareness Month

Emmett's back to school

Sarah’s messages are especially important, as October marks National Down Syndrome Awareness Month. Her advice in a nutshell to parents: With great help, technology, and experience from places like Children’s Health at Stanford Medicine, we can do tough things.

Knowing that Emmett’s team includes specialists in both Down syndrome and heart problems, he reassured her that his heart surgery would go well. “Doctor. It was highly recommended, and we felt we were in good hands.” The surgical team, including a cardiac anesthesiologist, met with Lowrys to answer questions and provide further confirmation. Emmett’s ear, nose and throat specialists install a respirator prior to surgery so that anesthesia can be administered smoothly.

“When you get a diagnosis for your child and there are going to be additional health concerns, there’s a lot of fear about that,” she said. “I love sharing my story. You never guarantee health. I love letting parents know that you will love your child no matter what, and you will have the grace to get through the tough things.”

Learn more about children’s health at Stanford Medicine heart care For children with simple to complex heart disease.

Resources for Down Syndrome Patients:

National Down Syndrome Association

Down Syndrome Center in Children’s Health at Stanford Medicine

Down Syndrome Research Center at Stanford University

Down Syndrome Connection to the Gulf Region

Silicon Valley Down Syndrome Network

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