Where Are They Now?

Paul’s mom and dad call him a miracle and are certain he is meant for great things in his very bright future! Last fall, Paul entered first grade and loves school and his teachers. He is very active - riding horses weekly with his mom, swimming twice a week, and is a Tiger rank in Cub Scouts with his dad as Scout Leader. Paul loves Jurassic Park/World, dinosaurs, Legos, racing games, and his favorite dinosaur T. rex.

At one point however, Paul’s parents, Jaclyn and Bryan, were told that he may not survive to be a teenager.

After 5 years of attempting to have a child, Jaclyn and Bryan were ecstatic to discover they were pregnant while in the process of filing for adoption. Jaclyn describes her pregnancy with Paul as amazing –despite ‘a lot of morning sickness,’ she was grateful to be carrying the baby they had always wanted and loved every moment.

Following his debut, Paul seemed to be a healthy and thriving newborn and Mom and Dad were feeling blissful that everything was absolutely perfect. Until it wasn’t.

During his 36-hour checkup, after hearing a heart murmur, Paul was taken to the Neonatal Intensive Care Unit for an echocardiogram. Tests revealed that Paul had a Congenital Heart Defect (CHD) called Tetralogy of Fallot.

Tetralogy of Fallot is a CHD that is made up of four problems and results in not enough blood flow to the lungs. They were told without open heart surgery Paul would not survive to be a teenager.

Congenital heart defects are structural problems arising from abnormal formation of the heart or major blood vessels and are the most common type of birth defect. CHDs affect 1 in every

120 births each year in the United States. And nearly 1 in 4 babies born with CHD has a critical CHD – meaning they require surgery or other procedures before their first birthday.

Bryan and Jaclyn wondered how this could possibly be happening, especially when looking at him, one wouldn’t even know Paul was sick. Babies born with Tetralogy of Fallot are often called ‘blue babies’ because their skin seems to have a blue tinge, due to poor oxygenation. Paul was considered a pink ‘tet’ baby, because his oxygen saturation remained near 100. Typically, with Tetralogy of Fallot, the heart shunts blood from the right side to the left side, sending oxygen poor blood to the body. Instead, Paul’s blood shunted from the left to right sides of the heart, keeping his oxygen levels very high, but causing constriction of the pulmonary blood vessels and risking permanent lung damage due to this increased blood flow.

At just 4-½ months old, Paul had open heart surgery. Dr. Toshiharu Shinoka was able to completely repair Paul’s heart. Paul continues to be followed closely by Nationwide Children’s Hospital, requiring yearly echocardiograms and checkups – and continues to have zero restrictions on his activities and takes no medication.

While there is no cure for CHD, ongoing progress in diagnosis and treatment – through surgery and heart catheterization - make it possible to treat most defects, even those once thought to be hopeless.

18 Distinct CHDs

At least 18 distinct types of congenital heart defects are recognized, with many additional anatomic variations.

CHDs affect nearly 1 in every 120 births - or about 40,000 - per year in the United States.

1 in 4

1 in every 120 babies with a CHD have a critical CHD.

Infants with critical CHDs generally need surgery or other procedures in their first year of life.

Common Of Heart

Types Defects

American Heart Association

Vsd

The most common type of heart defect is a ventricular septal defect - VSD.

Congenital heart defects CHDs

are structural problems arising from abnormal formation of the heart or major blood vessels.

The prevalence of some mild types of CHD is increasing, while the prevalence of other types has remained stable.

Children’s mental health was a national concern pre-COVID-19. Now, with the added stressors of the ongoing pandemic and issues of racial justice, climate concerns and violent events, children’s mental health is more important than ever.

Recognizing that children’s mental health has been one of the least talked about issues in pediatrics, Nationwide Children’s Hospital has stepped up to respond with the creation of On Our Sleeves, the movement for children’s mental health. Since its inception in 2018, On Our Sleeves has grown nationally to reach more than 3 million people in all 50 states with educational content.

On Our Sleeves is based on the idea that kids don’t wear their thoughts on their sleeves, so we don’t know what they are going through. Its mission is to provide families in the United States access to evidence-informed educational resources, powered by the experts from Nationwide Children’s. On Our Sleeves works to make sure everyone has an understanding of what mental health is – and that all children have mental health – by providing easy to use, accessible resources informed by research. Those resources help kids build mental wellness skills; increase understanding of children managing a behavioral health diagnosis; and help adults understand the warning signs and how to seek help when a child is approaching a crisis.

EDUCATIONAL RESOURCES FOR HOME, SCHOOL, AND WORKPLACE

An example of resources made available is On Our Sleeves conversation starters. Allowing children to have a regular, open space to share their thoughts, feelings and emotions can increase the likelihood that parents and caregivers will notice when their children need support with mental health concerns. Conversations at the dinner table, in the classroom, with our co-workers—heart-to-hearts so we learn about problems, get solutions, and build confidence along the way.

To help parents, caregivers and educators take the first step, On Our Sleeves launched Operation: Conversation, a program to encourage adults to sit down with the children in their lives to start — and most importantly continue — conversation to support mental health. This program offers helpful resources on starting general conversations as well as difficult conversations and topics for specific times of year, such as back to school.

Operation: Conversation features free conversation starters, tip sheets, and educational resources to open the lines of communication between caregivers and children. It also shows caregivers how to react to conversations in a positive way that helps build a healthy relationship and that won’t lead children to shut down, feel worse or not be open to talking in the future.

Make it a little easier to start the habit of communication— and keep it going (the most important part!) with our expert-developed resources and support materials. Scan the QR code to download this packet full of conversation starters, worksheets, helpful tips, and more for you and your family.

For School

For Schools

On Our Sleeves also supports another audience integral to children: educators.

Classroom conversations are key—mental health challenges are a barrier to children’s education, after all. Educators are encouraged to join us, using grade-specific resources as a guide. the curricula and resources are designed to help educators explore topics such as self-care, emotions, and stress.

Scan the QR code to access educator resources.

A recent classroom resource includes a collaboration with GoNoodle on a video series called The Mooderators. Clara and Skylar, two pre-teens, talk through their emotions and how to cope in this six-part video series aimed at children in grades first through fourth. Teacher and parent guides with activities complement the video series so educators can watch the videos and further explore the concepts learned.

For The Workplace

Children’s mental health also affects the workforce.

In 2021, On Our Sleeves set out to research how children’s mental health affects the workforce and how employers could support children’s mental health. Research was conducted with 5,406 working parents and caregivers across the country in partnership with the Nationwide Foundation to understand the current state of concern about children’s mental health, parents’ confidence in caring for their children’s mental health and the impact children’s mental health has on employers.

The results showed that children’s mental health has a large and direct impact on corporate success. Working parents noted that they are under increased stress because of concerns over their children’s mental health, and it is affecting their work. Further, the data showed that parents want to reach a state of confidence in their ability to help their children meet mental health challenges. View results of the workplace research by scanning the QR code above.

The result of this research was the creation of an online curriculum, “Bloom: Growing Kids’ Mental Well-being,” designed to help parents confidently support their kids’ mental health. Short courses and clear resources focus on the topics parents are asking for, including:

• Building mental wellness habits

• Starting mental health conversations

• Recognizing when kids need help

Early pilots show that parents see an increase in confidence around parenting and find the content helpful and relevant to their families’ situations. Learn more about Bloom by visiting: OnOurSleeves.org/Workplace.

On Our Sleeves is continuing to listen to parents, educators and employers about their concerns about mental health and work to create more resources to start these integral conversations and boost mental health and wellness.

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