Surprise Heart Defect Diagnoses at Birth: Noah’s Story

When Noah was born last May, his parents Lauren and John were expecting a healthy baby boy. They were shocked to learn that prenatal ultrasounds had missed his pulmonary atresia with intact ventricular septum (PA-IVS), a condition where the right side of the heart is underdeveloped, and there is no connection from the heart to the lung, compromising blood flow to the lungs and other parts of the body.

Noah’s pulmonary and tricuspid hypoplasia means that he was born with birth defects of the pulmonary and tricuspid valves, which control blood flow to the right side of the heart and eventually to the lungs. He was also diagnosed with a right coronary artery fistula, an abnormal connection between the coronary artery carrying oxygen-rich blood to the heart.

“When I was pregnant, I did everything I was supposed to do to grow a healthy baby. I gave up caffeine, ate well, and took the stairs every day to the ninth floor until I was 33 weeks pregnant,” says Noah’s mom Lauren, who is an occupational therapist at CHOC Children’s.

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Noah and his mom Lauren, who is an occupational therapist at CHOC Children’s.

The evening Noah was born, he had low oxygen and platelet levels and was brought to the neonatal intensive care unit within the hospital where he was born. Dr. James Chu, a CHOC Children’s pediatric cardiologist who was making rounds that evening, suspected Noah had a heart defect and ordered a cardiac ultrasound, or echocardiogram, a non-invasive procedure used to assess the heart’s structure and function.

Dr. Chu returned to Lauren’s room as soon as he had a better idea of Noah’s diagnoses, even though it was 3:00 a.m. He knew Noah’s parents wanted to know what was wrong as soon as possible.

“He drew us diagrams and gently explained Noah’s exact heart defects, their severity, and detailed the surgeries he would have to endure,” Lauren recalls.

Dr. Chu told Lauren and John their son needed a higher level of care.

“He gave us a few options of where we could transfer Noah, and when I told him I really wanted to go to CHOC, he reaffirmed my choice,” Lauren recalls. “Once we arrived at CHOC, another cardiologist, Dr. Ahmad Ellini, confirmed the diagnoses, explained everything again, and answered all of our questions.

“We didn’t have a lot of time to think about a game plan immediately after he was born,” Lauren says of Noah’s surprise heart conditions. “But I knew that CHOC was the best place for him to be.”

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As an occupational therapist at CHOC, Lauren has been caring for patients for years. She never imagined her son would become a CHOC patient shortly after he was born with surprise heart defects.

Surgery for PA-IVS

Noah spent a week in CHOC’s NICU before undergoing his first in a series of three heart surgeries. That first week was an emotional rollercoaster, Lauren recalls. Noah’s team of neonatologists, Dr. Amir Ashrafi, Dr. John Cleary and Dr. John Tran, helped his parents remain calm.

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Noah’s dad reads him his favorite book as he recovers from surgery to repair heart defects in the CVICU.

“The team of neonatologists were great. They answered all my questions, spent lots of time with us, and were super available― even if I had a question at 2:00 a.m. Everyone on his care team was very collaborative,” Lauren recalls, adding that she found the attention to detail and calm nature of Dr. Richard Gates, director of cardiothoracic surgery and surgeon-in-chief at CHOC, very comforting. “Dr. Gates knows his patients through and through. Even though I have a medical background, I’m still a parent. He describes things in a way my husband and I understand, especially when we’re sleep deprived and scared.”

Babies with PA-IVS typically undergo three procedures:

  • Blalock-Taussig (BT) shunt: a surgeon inserts an artificial tube to aid blood flow to the lungs. This procedure is usually done in the first week of life.
  • Glenn procedure: Usually done between 4–6 months of age, this operation allows blood returning from the upper part of the body to flow directly to the lungs without passing through the heart. Now the left ventricle only has to do one job, pumping blood to the body.
  • Fontan procedure: Typically occurring between 2 and 4 years of age, this surgery connects the pulmonary artery and the inferior vena cava (vessel returning oxygen-poor blood from the lower part of the body to the heart), allowing the blood coming back from the lower body to go to the lungs. Once this procedure is complete, oxygen-rich and oxygen-poor blood no longer mix in the heart. The surgeon may leave a small connection between the oxygen rich and oxygen poor chambers (a fenestration).

Lauren describes Noah’s surgeries to her family as a “miracle bandage” since they will not make PA-IVS go away. Noah may need a heart transplant someday.

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When Noah was recovering from surgery, his CVICU nurses helped him get ready for visitors by dressing up his bandages.

“When Noah was born his heart was the size of a walnut. Each of these surgeries are temporary, and it’s Noah’s job to keep growing, and eventually, to outgrow each of these repairs and need the next one,” she explains.  “Unfortunately, these surgeries cannot make his heart “normal” and he’ll always have serious heart disease, but we’re so grateful we have these operations to give him the best chance possible.”

After his first surgery, Noah spent five weeks in the cardiovascular intensive care unit (CVICU) at CHOC. For the first 48 hours of his recovery, he required extracorporeal life support (ECLS) (also known as extracorporeal membrane oxygenation or ECMO), a special procedure that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury or illness.

“I knew there was a possibility he’d need to be on ECMO after surgery, but it wasn’t something I allowed myself to think about,” Lauren says. “It was hard to see him hooked up to so many machines and be so fragile. Dr. Joanne Starr did an extraordinary job managing Noah’s care while he was on ECMO and she also cared for us as his parents too. She checked on Noah at all times of the day and night, and even ordered me to go take a walk in the butterfly garden to get a break from being at his bedside 24/7.”

Dr. Starr, director of ECMO and medical director of cardiothoracic surgery at CHOC, has long been committed to caring for a patient’s entire family.

“In caring for children and teens, it’s vital that we as physicians remember we are not only taking care of the patient, but the parents as well. Parental stress and anxiety may have an effect on the patient and the healing process. If parents aren’t practicing self-care, they might not have a clear enough mind to be able to understand their child’s condition and make decisions on their behalf,” explains Dr. Starr. “Having a family’s full support is an important part of the healing process, and something that goes a long way in ensuring a positive long-term outcome for my patients.”

After five weeks in the CVICU, Noah’s parents were thrilled to be able to bring their baby home for the very first time. But a mere 30 hours later, they were readmitted to CHOC as Noah fought a central line infection.

Things calmed down a few weeks later. He went home, continued growing, and started hitting developmental milestones and developing a big personality. During the next few months, the family was still coming to CHOC as frequently as a few times per week for blood and platelet transfusions. Ever since Noah had a low platelet count at birth, his parents knew that he would need transfusions― they just didn’t know how many. That turned out to be as many as three transfusions per week.

Lauren and her dad had a history of donating blood. For instance, if they were at a hospital visiting a family member, they would always go find the blood donor center and give “because it was easy and it was just the right thing to do,” she says.

“I always knew that donating blood and platelets was important, but having a baby who needed blood and platelets changed my respect for what a gift it really is,” Lauren says. “When my baby needed to go on oxygen, and then they gave him a red blood cell transfusion and all of a sudden, he doesn’t need supplemental oxygen anymore, it’s a game changer. To literally watch a kid who couldn’t oxygenate well on his own, suddenly not need help breathing because of a blood transfusion, is amazing.”

Over the past several months, Noah has been able to meet several of the donors who have given him much-needed blood and platelets.

“It is so humbling to meet his donors. Whenever we come to the Orange campus for appointments, we visit the blood donor center and have gotten to meet and thank some of his donors,” Lauren says. “The people who give regularly are my heroes. Being helpless and not being able to cure your child is heartbreaking. We rely on these strangers and their generosity. They don’t know us but they help us.”

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Noah meeting one of his platelet donors Kathleen, a CHOC staff member.

The need for regular donors ―platelets especially― is so great because the shelf life on blood products is not long. Red blood cells have shelf life of 42 days, but platelets only have a shelf life of 5 days, half of which is taken up by necessary safety testing before a patient can receive the donation. That means there is a window of about 48 hours where patients can receive donor platelets before they expire.

Direct donations, when blood and platelet donations are earmarked for specific patients, are an important way to safeguard patients who need ongoing transfusions, as they help minimize the number of different types of blood products they are exposed to during treatment. This will also help to improve Noah’s chances of being matched for a heart if he needs one in the future. Lauren outlined the ways donors helped her son in handwritten thank you notes she asked the Blood & Donor Services staff to distribute to his directed donors.

When Noah was about five months old, he underwent a cardiac catheterization procedure to determine if his heart was ready for the next surgery. This was standard protocol before part two in his series of surgeries, the Glenn procedure.

“It never crossed my mind that more bad news was coming because he looked ok. We thought he was doing fine,” Lauren says.

During Noah’s cardiac catheterization, his team noticed that the fistula in his heart had grown significantly in size. Noah’s “lucky fin” (as Lauren refers to his right ventricle) grew, which wasn’t good news for the left, healthy side of his heart. The weaker side of his heart was stealing space, blood and other resources from his stronger side. The discovery prompted the question, “Do we rush him into the Glenn procedure or go straight to a heart transplant?” ― a conversation his parents were not prepared for at the time.

“I didn’t even know what to hope for. Do we hope for the Glenn, or do we hope we find a new heart and a transplant goes well?” Lauren recalls. “His team told us to hope that his heart lasts as long as possible.”

His cardiology and hematology teams at CHOC rushed to help the family coordinate second opinions at other institutions within just a few days. They also helped the family coordinate a transplant evaluation, a three-part process to determine if the patient is medically qualified and the family emotionally prepared to care for a transplant patient.

“With invaluable input from a Southern California pediatric transplant team, and after multiple phone and in-person conferences amongst all his caregivers and his family, it was decided that Noah’s best chance at a positive outcome would be to have his Glenn procedure at CHOC,” recalls Dr. Ellini. “I have never worked at an institution that can so quickly mobilize to make sure that patients obtain the best care possible. It is even more amazing that our team at CHOC has the ability to use its regional resources to optimize the care of our complex patients like Noah.”

The consensus was clear―Noah needed a second surgery, and he needed it to go perfectly, or else he would need a heart transplant.

“That week rushing to get second opinions was a whirlwind,” Lauren recalls. “My husband and I were basically looking for any reason to stay at CHOC for surgery. Not only did we have complete confidence in Dr. Gates, but Noah’s entire care team has always treated him like he was their own child. There were so many people at CHOC totally invested in his care― everyone from cardiology, hematology, blood and donor services, the CVICU, everyone.”

After surgery, which went well, Noah stayed in the CVICU for 10 days before going home.

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With every appointment at CHOC comes a special visit to the Blood & Donor Services Center to thank blood and platelet donors for helping kids like Noah.

“I didn’t realize how hard he was working to just survive until after his second surgery,” Lauren says. “I couldn’t see how hard his heart was working to do anything because he was still happy, growing and meeting developmental milestones. But now I can just tell he feels so much better. He has more energy to play and skills are coming to him more easily now. It’s really amazing to see.”

The reason why Noah required platelet transfusions for the first few months of life remains a mystery. Thankfully, he hasn’t required platelets since his second surgery, when he was almost six months old, and his care team remains hopeful this is something he’ll grow out of.

The reason his platelets continue to be low remains a mystery, but Noah is slowly improving under the close watch of his hematology team, including Dr. Diane Nugent, Dr. David Buchbinder, Dr. Arash Mahajerin, Dr. Amit Soni, Dr. Victor Wang and Dr. Geetha Puthenveetil. Noah has an affinity towards Dr. Puthenveetil, whose last name means ‘Newhouse’ (Noah’s last name) in her home language. His family remains hopeful Noah won’t need any more transfusions, and his directed donors can now donate to help other CHOC patients in need.

Noah’s third open heart surgery, the Fontan procedure, will happen in a couple years.

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At a recent appointment, Noah’s fan club at CHOC welcomed him with a special message on the exam table.

Even though Lauren has been a valued CHOC employee for over four years, she knows the high level of care her son has received isn’t due to special treatment.

“We are treated like family here not because I work here, but because that is how CHOC treats all patients.”

Today, one-year-old Noah is “defying all odds in terms of cardiac babies,” his mom says. He is very curious, always alert, and loves flirting with his favorite nurses.

Learn more about the Heart Institute at CHOC Children's

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Rehabilitation Therapists’ Role in a Pediatric Environment

By Leesha Augustine, physical therapist; Hema Desai, speech language pathologist; Erin Keller, speech language pathologist; Adriana Rusch, occupational therapist; and Vicky Vu, occupational therapist at CHOC Children’s

The field of rehabilitation services includes a wide variety of opportunities including hospitals (where therapists can treat patients in any department), schools, and outpatient facilities including specialty facilities in the fields of mental health, sports medicine, wellness programs and rehabilitation/skilled nursing. Rehabilitation treatment can be provided for a variety of reasons throughout someone’s life from infancy through adulthood. The Rehabilitation Services team at CHOC Children’s includes physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists (SLPs). Each therapy discipline also has licensed therapy assistants.

What training is required to work in pediatric rehabilitation services?

The therapist track for each discipline requires graduate school in order to be licensed by their respective national boards. The Doctor of Physical Therapy (DPT) Program is a three-year post baccalaureate program. The traditional OT program is a two-year master’s degree, with the option to further specialized training with a two-year clinical doctorate (OTD). SLP programs are also a two-year master’s degree, along with completion of a nine-month clinical fellowship following graduation. The assistant track for each discipline require a two-year associate degree including a hands-on practicum and licensing exam.

What does a physical therapist do?

They have the opportunity to work with patients and their families to help them restore function to allow them to return to school, sports, playing with friends, work and family events.

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After surgery, physical therapy played a big role in Sydney’s life. Her PT, Robin, is a two-time Olympic medalist and helped Sydney, a fellow athlete, connect with her treatment.

What does an occupational therapist do?

Occupational therapists help others participate in daily activities as independently and safely as possible. They also help children with sensory difficulties, fine motor skill delays, oral motor and feeding skill delays, and dressing difficulties.

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Occupational therapists help others participate in daily activities as independently and safely as possible.

What does a speech language pathologist do?

The role of a SLP is to prevent, assess, diagnose and treat speech, language, social communication, cognitive-communication and feeding/swallowing disorders so that individuals can interact with others to the best of their ability.

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Nicole, a speech therapist at CHOC, works with patients with feeding and swallowing disorders, speech delays, brain injuries, and vocal cord dysfunction.

Where would you find rehabilitation services in a hospital setting?

The depth and scope of Rehabilitation Services at CHOC Children’s Hospital is vast, with members of the department working within most service areas of the hospital, including: four specialized intensive care units, the hematology/oncology unit, the medical/surgical unit, and the Neuroscience Institute.

Members of the rehabilitation team provide developmental support for many infants in the neonatal intensive care unit (NICU). You may find a SLP or an OT coaching a parent on how to feed their baby for the first time, an OT making custom hand splints to help facilitate improved hand function, or a PT may provide specialized wound care  or assist a patient out of bed for the first time. The rehabilitation team will work with children and families in the pediatric intensive care unit (PICU) so that a parent can feel safe holding their child after a long-term intubation, a patient with a brain injury can say, “I love you” to his family, and play with his favorite toys.

Children with prolonged hospitalizations due to cancer treatment may receive rehabilitation therapy to encourage developmental skills as well as to recover from the effects of their illness and treatment. While they are admitted to the hospital, we work closely with them to help them regain function in a variety of areas: gross motor skills, fine motor skills, daily activities such as dressing themselves and taking steps, feeding and swallowing, eating and drinking safely, and being able to communicate with their friends and family.

As much as rehabilitation professionals love working with children and their families while they’re in the hospital, the primary goal of this team is to facilitate a safe discharge home and to enable our patients and families to participate in the activities that are most important to them.

Our Orange campus also has a multidisciplinary outpatient rehabilitation department including PT, OT, ST, hand specialist, feeding and wound care therapists. Here, our PTs, OTs and SLPs keep working with our patients after they are discharged from the hospital, as well as patients that are referred for pediatric specialty care from their pediatrician. You will also find PTs, OTs and SLPs working in our ambulatory care clinics, and serving as clinical instructors in their graduate and assistant programs.

No matter the setting for rehabilitation services, treatment goals always have the same common theme― helping kids enjoy doing the things they like best like riding a bike, drawing, or even being able to eat a cupcake!

Learn more about rehabilitation services at CHOC

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The Importance of Early Sensory Experiences in Development

By Erin Karavedas, occupational therapist at CHOC Children’s

As a baby crawls around a room touching objects, playing with toys, listening to their mother or father sing songs, or putting things in their mouth, they are doing much more than simply playing. They are using their senses to learn about and explore their environment. Parents can enhance this learning by providing positive sensory experiences.

Sensory play or experiences are activities that allow your baby to interact with their surroundings and learn about their world. Through this type of exploration and play their brains grow and mature as connections are made in the brain.

When a child is born, their brain is ready to absorb information about their environment. They’re already learning long before they are walking and talking. This learning takes place through touch, hearing, sight, taste, smell and movement. They hear our voices, chew on toys, love bouncing and touch anything they can.

The more positive sensory experiences a baby has, the stronger these connections become.  By providing your child with a wide range of experiences that involve their senses, they develop strong brain pathways. Sensory play not only positively impacts your baby now, but the connections that are made help to support learning and development even into adulthood. A baby who is not given the same diverse set of opportunities and is kept in a swing all day or is kept in a very dark quiet environment can have their learning and brain development stunted by lack of exposure to sensory stimuli.

Parents can have a direct impact on the development of their baby’s brain through providing a variety of positive sensory experiences such as:

  • 0-3 months: Singing, bouncing, talking, swinging, bath time, massage, hanging a colorful mobile for the baby to look at, placing rattles in baby’s hand for exploration
  • 3-6 months: At this point you can add tummy time, play with food (purees), reading, encourage baby to touch fabrics with different textures, and shaking rattles
  • 6-9 months: Now you can start to blow bubbles, play in different positions on the floor, play with cause and effect toys and games such as play peek-a-boo
  • 9-12 months: Now is the time to add water play, crawl/walk/play on grass or sand, play on swings and slides, tasting and exploring a variety of foods, finger painting, play-dough

It is important to note that children can become over-stimulated or overwhelmed when given too much sensory input. A child might enjoy some sensory play and become very uncomfortable with another type of sensory play. If your child is having a hard time tolerating an activity, don’t avoid it altogether. The best option is to take a break and then try to gradually expose your child to that specific input. For example, some children have a hard time with messy play (this can be playing with food, finger painting, shaving cream, wet sand, etc.). Instead of forcing them to engage in messy play you can start in the bath tub, with just a small amount of shaving cream where they have the ability to wash it off; or you can just put 1 drop of paint on the paper and encourage them to touch it as opposed to pouring it all over the paper and placing their entire hand in it. Your child’s behavior will let you know how comfortable they are with an activity.

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Related posts:

  • Surprise Heart Defect Diagnoses at Birth: Noah’s Story
    When Noah was born last May, his parents Lauren and John were expecting a healthy baby boy. They were shocked to learn that prenatal ultrasounds had missed several heart defects. ...
  • Rehabilitation Therapists’ Role in a Pediatric Environment
    Rehabilitation therapists can work in a variety of settings including hospitals (where therapists can treat patients in any department), schools, and outpatient facilities including specialty facilities such as mental health, ...
  • Occupational Therapy Celebrates 100 Years
    By Lauren Francis, occupational therapist at CHOC Children’s Occupational therapy is turning 100! The specialty’s roots formed in 1917 as “reconstruction aides” who helped rehabilitate wounded soldiers returning from battle in ...

Occupational Therapy Celebrates 100 Years

By Lauren Francis, occupational therapist at CHOC Children’s

Occupational therapy is turning 100! The specialty’s roots formed in 1917 as “reconstruction aides” who helped rehabilitate wounded soldiers returning from battle in World War I. Today, occupational therapists apply a holistic approach to help children and adults engage in meaningful activities.

Occupational therapists are experts in addressing any and all areas that “occupy” one’s time. For infants and children, occupational therapy (OT) includes play, learning to move and explore, feeding and eating, and bonding with parents and caregivers. For children and teenagers, this can include gaining independence with self-care, being successful in school, and playing with friends. Pediatric OT sessions often look like play to the untrained eye – most children really enjoy therapy!

CHOC’s occupational therapists (OTs) are highly skilled and trained to help children of all ages who have unique needs. Some key components of OT are:

Feeding Specialists

For a variety of reasons, children may have trouble getting the nutrition they require to grow and develop. CHOC’s occupational therapists help treat a wide range of feeding issues, including babies who have trouble with breast and bottle-feeding, children who have oral motor or sensory difficulties and cannot manage textures of food, and teenagers who may have had an injury or procedure that affected their ability to eat. OTs at CHOC are also highly skilled in specialty therapies such as feeding tube weaning and swallowing therapy.

Sensory & Developmental Specialists

CHOC’s occupational therapists have advanced expertise and techniques to offer children and families with an assortment of developmental challenges as well. From supporting a child to stay strong and active through chemotherapy to helping a child recover from a neurological disorder or brain injury, occupational therapy can be a crucial part of a multidisciplinary care team. Children who have difficulty with sensory processing, learning delays, challenges with self-care, visual motor or visual perceptual deficits, difficulty coordinating their arms and hands, or who aren’t meeting developmental milestones, can all be excellent candidates for occupational therapy intervention.

Parent/Caregiver Collaboration

Perhaps one of the greatest roles occupational therapists play is working with the parents and families of the children we serve. Parent education and involvement in therapy is an essential component to ensuring a child meets his or her goals. Through CHOC’s commitment to patient- and family-centered care, our OTs closely partner with parents to create individualized treatment plans, offer customized home programs unique to each child’s needs, and engage them in all aspects of care.

Preventative Care

CHOC OTs work tirelessly as part of an advanced team to screen children who may be at risk for developmental delays. They apply years of clinical experience and expertise along with standardized testing to assess a child’s movement, mobility, hand use, interaction with the environment, and feeding skills. For children who require a long hospital stay, OTs help provide developmentally appropriate stimulation to help each child continue to grow and develop during their hospital stay.

If you think your child would benefit from occupational therapy, speak to your child’s primary care doctor.

Learn more about rehabilitation services at CHOC.

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April is Occupational Therapy Month

The occupational therapy program at CHOC helps children develop or improve important skills for daily life. In honor of National Occupational Therapy Month, we spoke to Chelsey Kaufman, an occupational therapist at CHOC Children’s. Kaufman works with acute hospitalized patients on building or re-building fine and gross motor skills and developmental milestones, as well as feeding and swallowing disorders.

Q: Why did you want to become an occupational therapist?

A: I always knew that I wanted to work with kids in the medical field, but I wasn’t sure in what capacity. I first discovered occupational therapy when I was in high school. I used to babysit a child with a medical condition, and I would accompany him to occupational therapy. I found it so amazing to watch a young child regain the strength and independence needed to do all the activities that just getting to be a kid encompasses. It was so special to observe his parents watch him have experiences that are innate and natural for most children. In watching and observing sessions, I realized occupational therapy was what I wanted to do with the rest of my life. Now, as an occupational therapist, I get to help children rebuild foundational skills they need for functional tasks, and help them maximize their independence during these activities.

Q: What part of being an occupational therapist are you most passionate about?

A: I am most passionate about the families and children I am lucky enough to work with. Working in acute care, I meet families and children at what may be one of the most stressful and vulnerable times in their lives. To be let into that time and to help give a child the tools to grow and develop and regain independence with daily activities, or to help a baby learn to feed and swallow safely is a privilege. I feel so lucky and fortunate to get to do that every day.

Q: What advice would you offer someone considering pursuing a career in occupational therapy?

A: I think it is such a special, unique and rewarding profession no matter what area you practice in. Because there are so many different areas and settings, it is important to research all the different opportunities as well as volunteer or get an internship in specific areas of interest.

Q: What attracted you to CHOC?

A: I had always wanted to work in a pediatric hospital setting. I was specifically attracted to CHOC because of the multi-disciplinary inpatient feeding program as well as the incredible opportunities to enhance and expand my career.

Q: What else should people know about occupational therapy?

A: A lot of people are unfamiliar with occupational therapy. I think one of the most important things to know is that there is so much diversity and variety within the profession in terms of populations, settings, and specialties. The profession is also expanding rapidly due to the large amount of growing research and evidenced-based practice. There are so many opportunities for professional growth and the ability to expand knowledge.

Occupational therapy may be recommended if a child has delayed developmental skills, abnormal muscle tone, limited movement, swallowing or feeding issues, or is not able to do age-appropriate self-care activities. Learn more about CHOC’s occupational therapy program.