All posts by CHOC Children's

Tis the Season for Healthy Holiday Eating

By Lindsay Rypkema, registered dietitian at CHOC Children’s

The holidays are a time filled with family, friends and food. It is important for parents to model good eating habits as well as provide healthful meals and snacks in a season often filled with overindulgence. Eating healthy doesn’t mean you have to forgo all the holiday goodies your family loves, but small modifications can make a big impact. Below are some tips for healthy holiday eating.

  • Snack before you go: Never attend a holiday party hungry! To avoid overeating, consume a light snack at home such as vegetables and hummus or Greek yogurt and fruit. Protein and fiber will keep you full longer.
  • Prepare balanced meals: Choose one item from every food group. Limit the dessert options and always have fresh fruit and vegetables available.
  • Limit sugary drinks: Instead of cider, juice and soda, try infusing water with seasonal fresh fruit such as pomegranate, cranberries or blood orange. Wash fruit, slice and add to water pitcher. You can also use cookie cutters to make holiday shapes.
  • Limit sugar in baking: Baking is a fun holiday tradition but can result in excess calorie and sugar intake. Decrease sugar by 50 percent and add other spices such as vanilla, cinnamon or nutmeg for added flavor. Try replacing the recommended oil with unsweetened applesauce or mashed banana in a 1:1 ratio to decrease calories. This works well in cakes, muffins and breads.
  • Try making a visual and healthy treat: Healthy snacks and desserts don’t have to be boring. For example, you can make a candy cane out of banana and strawberries. Pinterest has some great ideas to make a Santa out of strawberries or a Grinch out of grapes.
  • Get a jump start on your family’s resolutions: Don’t wait until the New Year to increase physical activity. Take a walk or play flag football after your holiday meal. Exercise is an important part of healthy living.
  • Consider simple swaps: Side dishes such as mashed potatoes and stuffing are often a family favorite but can be very high in calories and tempting to overeat. Try offering quinoa in place of stuffing for a healthy, high protein option. Consider using plain Greek yogurt in place of sour cream for added protein. You can also make mashed potatoes out of cauliflower. Try this easy recipe this season:

Cauliflower Mashed Potatoes

2 head cauliflower, cut into florets

2 tablespoon olive oil

1/2 cup Parmesan cheese

2  tablespoons reduced – fat cream cheese

1/4 teaspoon garlic powder

*Salt and pepper to taste

Directions

Steam or boil cauliflower until tender. Mix olive oil, Parmesan, cream cheese, & garlic powder in bowl. Use food processor to blend cauliflower on high. Slowly add your oil/cheese mixture until completely blended. Salt and pepper to taste.

Related posts:

  • Feeding your Family Seasonal Vegetables
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How Much Screen Time is Too Much?

The American Academy of Pediatrics (AAP) recently lifted their rule on no screen time for kids under the age of two. Given advances in technology, media is everywhere these days- it’s hard for kids to not get enthralled by a TV, laptop, tablet or smartphone.

“The new guidelines reflect a shift in focus to include not only what is on the screen but also the involvement of the live person in the room to interact in the media experience,” Dr. Katherine Williamson, a CHOC Children’s pediatrician, says. Though the AAP says it’s still best for babies less than 18 months to avoid screen time, live video chat is an exception. While babies under 18 months are too young to understand what they are seeing on media screens, some research has shown that babies as young as six months can emotionally engage and interact with a loved one on FaceTime or Skype, for example.

But how you know how much screen time is healthy for your child?

how much screen time
The American Academy of Pediatrics released new guidelines on how much screen time is appropriate for children.

The AAP recommends creating a family media use plan to help your family establish a purpose to consuming media, create healthy habits for screen time, and stay on track with goals.

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CHOC Named One of the Safest Hospitals in the Nation

CHOC Children’s Hospital has once again been named a “Top Hospital” by The Leapfrog Group for providing the safest and highest quality health care services to patients.  CHOC is one of only nine children’s hospitals in the nation—and the only one on the West Coast— to earn the prestigious distinction.

leapfrog award

“CHOC is committed to becoming the world’s safest children’s hospital. While this is a never-ending journey, being named as a Top Children’s Hospital for the eighth time by the Leapfrog Group suggests we are on the right track. Leapfrog has always emphasized patient safety as the top priority, one with which our patients, families and partners would no doubt agree. It’s a humbling honor, and serves as both encouragement and motivation to continue our efforts to provide the safest, highest quality care possible,” said Dr. James Cappon, chief quality officer, CHOC.

The selection of Top Hospitals is based on the results of the 2016 Leapfrog Hospital Survey. Performance across many areas of hospital care is considered in establishing the qualifications for the award, including infection rates and a hospital’s ability to prevent medication errors. The rigorous standards are defined in each year’s Top Hospital Methodology.

“Being acknowledged as a Top Hospital is an incredible feat achieved by less than three percent of hospitals nationwide,” said Leah Binder, president and CEO of The Leapfrog Group. “With this honor, CHOC has established its commitment to safer and higher quality care. Providing this level of care to patients requires motivation and drive from every team member. I congratulate CHOC’s board, staff and clinicians, whose efforts made this honor possible.”

To see the full list of institutions honored as 2016 Top Hospitals, please visit www.leapfroggroup.org/tophospitals.

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What Parents Should Know About Infantile Spasms

With Infantile Spasms Awareness Week recognized Dec. 1 through 7, we spoke with a CHOC Children’s neurologist about this type of epilepsy that occurs in young infants typically between ages 3 and 8 months.

Infantile spasms should be considered a medical emergency due to the potentially devastating consequences on the developing brain, Dr. Mary Zupanc, chair of neurology at CHOC, says. Immediate treatment is critical because many children with infantile spasms go on to develop other forms of epilepsy.

infantile spams
Dr. Mary Zupanc, chair of neurology at CHOC Children’s, treats patients with infantile spasms

“A developing brain undergoing an ‘epileptic storm’ essentially becomes programmed for ongoing seizures and cognitive/motor delays,” she says.

Here’s what parents should look for when potentially identifying infantile spasms:

  • Infantile spasms often happen in clusters, with each spasm occurring every five to 10 seconds over a period of three to 10 minutes or longer
  • Though there is almost always a cluster of spasms in the morning when the child awakens from sleep, infantile spasms can occur at any time during the day or night

If infantile spasms are suspected, parents should seek a referral to a pediatric neurologist immediately. CHOC neurologists admit these children urgently to the hospital for long-term video electroencephalogram (EEG) monitoring to confirm the diagnosis.

If infantile spasms are confirmed, the first line of treatment employed by CHOC neurologists is a high-dose adrenocorticotropic hormone, or ACTH. The course of therapy is about six weeks, and the treatment is administered by injection. Because parents are often initially afraid to inject their baby, CHOC neurologists and nurses work closely with families to help them become comfortable with the process before heading home.

The effectiveness of ACTH may be as high as 85 percent, and the treatment has better success rates if started within four to six weeks of seizure onset. Seizure control and a normalized EEG reading mark a successful therapy.

Children undergoing ACTH might have some side effects including high blood pressure, increased appetite and weight gain, elevated sugar in the blood, temporary suppression of the immune system, and sometimes an upset stomach. All side effects are monitored during treatment and disappear at its conclusion.

The causes of infantile spasms vary. Some children may have tuberous sclerosis, a multisystem disorder; abnormalities in the brain’s formation; stroke; an infection such as meningitis or encephalitis; trauma; or genetic disorders such as Down syndrome or defects in the metabolism of proteins, sugars, and fats.

Learn more about CHOC Children’s Neuroscience Institute.

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Getting your Little Patient to Follow Medication Directions

By Grace Lee, clinical pharmacist at CHOC Children’s

Grace Lee
Grace Lee, clinical pharmacist at CHOC Children’s, offers tips on getting children to follow medication directions.

Medication compliance is defined as how well a patient follows the directions written on a prescription. In a perfect world, we would follow the instructions ordered by our doctors all the time. However, there are many reasons why this doesn’t always happen. Poor compliance can lead to the failure of a treatment plan in many diseases. Also, if the doctor assumes that a patient is taking his or her medications as directed when they actually aren’t, this may lead to unnecessary dose adjustments since the doctor thinks the medication is not working.

Maintaining perfect compliance is difficult but not impossible. While all of us are prone to forget a dose of medication here and there, there are ways to improve our chances of remembering. Consider these tips on improving medication compliance:

  • Try linking medication doses to other daily activities, such as eating meals, brushing your teeth, or going to bed.
  • Create a medication schedule on paper or use a pillbox that contains days or a week’s worth of medication. This is an especially good idea when multiple care takers are involved, or if the child spends time in more than household. Refill the box at the same time every week.
  • Alarms on your watch or smartphone are another way to remind yourself when it’s time to take or give medicine. Many smartphone apps allow you to set reminders to take or give a dose, obtain refills, and even provide drug information.
  • Sign up for automated refill reminders at your pharmacy or consider a mail-order service that can deliver up to 3 months of medication at a time so you don’t run out.
  • If the cost of your medicine makes it difficult to afford refills, speak with your doctor or pharmacist about generic or alternative options.
  • Since compliance dramatically decreases with the complexity of the medication regimen, ask your doctor or pharmacist if the regimen can be simplified by using combination products, longer acting formulations, or if certain drug can be eliminated.

Non-compliance could also result from not understanding the importance of taking the medicine or disliking the side effects.  Having a trusting, open relationship with your health care provider is the best way to overcome these concerns. Be honest with your doctor – if it is unclear why you need a certain medication, clarify it with your prescriber. Often there are other medications that can be tried if a side effect is unbearable. Do not take alternative or herbal medicines, assuming they are safer than your prescription medications, without consulting with your doctor or pharmacist first.

The teenage years are an especially challenging time to maintain medication compliance. Often time parents want to hand over the responsibility of administering medicines to their teen, but they may be forgetful or feel embarrassed to take their medications in front of their peers. Smartphone apps are especially good for this age group. Setting up a support system involving the school nurse or close friends can be useful when you are not around to monitor. If embarrassment is a concern, encourage them to take the medications privately. For parents who want to monitor how well their child is doing keeping up with medications, there are bottle caps that count the number of times a bottle is opened, or devices that record how many times an inhaler has been used. Remind them of the positive rewards to staying healthy, such as the ability to participate in sports, go out with friends, and even drive.

For a higher fee, there are pill bottles that can be programmed to flash or make noises when a dose is overdue, or personalized rolls of presorted medications that come in a dispenser.  Like any habit-forming behavior, the tips on improving medication compliance that will work for an individual or family will vary. The important thing is to develop a plan and stick with it. With the help of your doctor and pharmacist, strong compliance is achievable!

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Inside the Small Baby Unit: Ryan’s Story

Danielle McLeod was looking forward to an easy second pregnancy and ultimately caring for her infant son as a confident and assured second-time mom.

But that expectation changed when little Ryan was born three months early this past winter after just 27 weeks gestation and weighing only 2 pounds and 1 ounce.

small baby unit
Patient Ryan shortly after his birth and before he was transferred from another hospital to the Small Baby Unit at CHOC Children’s.

“His head wasn’t much bigger than a pacifier,” Danielle recalls. “He was the littlest baby I had ever seen. He was so skinny, and was all arms and legs. I was amazed at how active he was for such a little person. Like many preemies, he was a fighter from the start.”

And fight Ryan did inside CHOC Children’s Small Baby Unit (SBU), a portion of CHOC’s neonatal intensive care unit (NICU) dedicated to the care of babies born with extremely low birth weights. These patients are born at less than 28 weeks gestation and weighing less than 1,000 grams, or about 2 pounds and 3 ounces.

In the SBU, “micro-preemies” like Ryan receive coordinated care in a developmentally appropriate environment. A trailblazer in neonatal care nationwide, the unit is saving babies who just decades ago wouldn’t have likely survived.

“With its coordinated care in an environmentally appropriate location, the Small Baby Unit is designed to care specifically for babies like Ryan,” says Dr. Kushal Bhakta, Ryan’s neonatologist and medical director of the SBU. “When he came to the unit, he required significant ventilator support due to an ongoing infection, and he had a long road ahead of him.”

Danielle’s breezy pregnancy took a sudden turn early in her second trimester when her doctor found in her womb a subchronic hematoma, an indicator that she might deliver her baby early.

 Danielle was put on bed rest, but a few weeks later, bleeding and signs of labor showed. At the hospital, doctors were able to stop the labor and admitted Danielle to keep it from beginning again too early. But about six weeks later, Danielle’s water broke and she underwent an emergency cesarean section.

On Valentine’s Day, after two weeks of ups and downs, Ryan was transferred to the SBU at CHOC and the McLeod family began their four-month journey.

“I don’t think people understand the pain that comes with having a child and not being able to hold him immediately or not being able to take him home shortly after delivery and share him with the world,” Danielle says.

small baby unit
Ryan was born at 27 weeks gestation and spent 17 weeks in CHOC’s small baby unit before going home.

She continues, “It was difficult knowing that there were many obstacles for Ryan to overcome before he could even think about coming home. Simple things like eating by mouth, a task that should come naturally, are challenging for babies born premature.”

During that time, while also focusing on growing, Ryan also battled chronic lung disease and a brain bleed, and learned to eat and breathe on his own. Meanwhile, Danielle and husband, Jared, learned how to care for a baby born more than three months early.

“I’ll never forget our first day at CHOC,” she says. “I was so overwhelmed, scared, and nervous. Once Ryan was settled in the SBU, his nurse came in to do his very first set of cares. I sat and watched, afraid to touch him. He was so fragile.”

She continues, “His nurse said, ‘Get in there, mama. You can do it.’ She had me put my hand on him, my hand covering his whole little torso. She talked me though what to do when caring for an extra small baby. From then on, I felt confident to be close to my little fighter.”

small baby unit
Members of Ryan’s care team included Dr. Kushal Bhakta, medical director, and Ryan’s mom Danielle.

After 17 weeks in the SBU, Ryan finally went home to join his parents and brother. He still receives oxygen treatment and undergoes physical therapy twice a week, but is doing well.

It takes a village of physicians, nurses, therapists, social workers and other clinicians to help bring babies like Ryan home — and every one on the care team partners with patients’ families.

“During his stay in the unit, Ryan overcame great obstacles, thanks to the partnership between his care team and his parents,” Dr. Bhakta says. “Our goal in the unit is to get our patients home with the best possible outcomes. Today, Ryan is doing well and has a bright future ahead.”

small baby unit
At CHOC, parents are valued members of the care team. Here. Ryan’s dad holds him for the first time in the small baby unit.

Small but mighty, Ryan is rolling over and pushing himself up well, and is working toward sitting up by himself.

“He also loves smiling and laughing, especially at his big brother,” Danielle says.

small baby unit
After graduating from CHOC’s small baby unit, Ryan has been enjoying being home with his family and playing with his older brother.

“We’re moving in the right direction,” she says. “We are so grateful to all the wonderful nurses and doctors who cared for Ryan. I know he is doing so well because of the amazing care he received while in the SBU. We love our little fighter. He’s such a good baby. He is truly a miracle and we are blessed to be able to witness this little guy’s journey.”

Related posts:

  • Meet Dr. Kushal Bhakta
    In recognition of prematurity awareness month, we’re highlighting Dr. Kushal Bhakta, medical director of CHOC Children’s Small Baby Unit (SBU). The Small Baby Unit – the first of its kind – ...
  • Neonatology by the Numbers
    November is Prematurity Awareness Month. In honor of this observance, we share an inside look at our neonatologists and services they provide to care for babies daily in Orange County. ...
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Living with Diabetes: One Child’s Perspective

In honor of American Diabetes Month, CHOC Children’s patient Ava Hata sheds insight on living with the disease. Ava, who is 11, was diagnosed with Type 1 diabetes when she was just 18 months old. She and her mom Rebekah, who founded TIDModsquad, are active advocates for patients and families, with Ava striving to be a positive role model for others.

How did you learn to manage your disease?

I remember the first time I pricked myself. I was about 4 years old, and I hated being dependent on other people to prick my finger. I snuck into my bedroom and did it based on what I had observed my parents doing. After that day, the momentum of learning to do it all by myself really took off. And now, after living with Type 1 diabetes for many years, I have an instinct for what I need to do. And while it may seem absurd at times, my instinct has worked in my favor. I have learned what to do and when to do it.

What do you like about your CHOC team?

I love being treated at CHOC by its endocrinology and diabetes team. The nurses are a pleasure to talk to, and Dr. Reh is the best!  She is and always will be my favorite endocrinologist. She’s been taking great care of me since I was little.

What are your hobbies?

I love being around animals. I ride horses and train diabetic alert dogs. I have my self-trained diabetic alert dog, Bruin, who has opened so many doors of opportunity. One cool moment was when I took my dog to see Dr. Bhangoo and got to spend time telling him how Bruin gives alerts on my highs and lows.

tips for kids with Type 1 diabetes
CHOC patient Ava and her self-trained diabetic alert dog, Bruin, share tips for kids with Type 1 diabetes.

In addition to training, I love to show dogs. Other interests include history and literature, as well as building all sorts of objects, from playhouses to terrariums.

How do you manage pursuing all of your interests in spite of living with a chronic condition, and what advice do you have for others?

Honestly, I believe you will always find a way to do what you love. Just keep walking forward, and everything will work out.

What else would you want people to know about living with diabetes?

First of all, people need to understand that it’s not simple and although you think there is a “control” with diabetes, there isn’t — and won’t be until there’s a cure. I’d also really like people to know that I am just like them in the sense that each of us has our differences, including responsibilities. It’s important to accept others and not discriminate against them.

I also want people to know there are numerous support groups, including the one my mom and I founded. It’s nice to connect with others who are going through something similar. You become an instant family!

tips for kids with Type 1 diabetes
Ava and her self-trained diabetic alert dog Bruin.

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Skin Reactions to the Sun

By Ara Jamasbi, pediatric resident at CHOC Children’s

Living in Southern California, we are lucky to experience beautiful sunny weather practically year round. While we’re all aware of the dangers of sunburns, there are other skin reactions to the sun to be mindful of as well.

Photosensitivity is abnormal or adverse skin reactions to the sun. and If your child develops a sunburn reaction, swelling, or intense itching after limited exposure to sunlight or shows a rash or scarring in a sun exposed area (ie. face, V of neck), they may actually have photosensitivity.

Polymorphous light eruption, also known as “sun allergy” or “sun poisoning” is the most common photosensitivity. It occurs 1-2 days after intense sun exposure. It may range from small red dots to clear fluid-filled dots (vesicles), eczema-looking dry patches, large plaques/papules, or target-like lesions. The commonly involved areas include the face, neck, arms and hands where there was sun exposure. In children, it starts as dry patches on the face with red small dots, with severe itching. Lesions disappear in 1-2 weeks spontaneously if no further sun exposure occurs.

Solar urticaria is another type photosensitivity characterized by itching and redness usually after about 30 min or less of sun exposure. After several hours, the skin returns to normal. The cause is unclear, but antihistamines, corticosteroids and limited sun exposure have all been beneficial.

Phytophotodermatitis occurs when UV light reacts with certain chemicals on the skin. These chemicals can come from common foods such as limes, carrots, parsley and celery. The rash typically appears 24 hours after the exposure, and can take weeks to months to completely resolve. It may appear as a red itchy rash, but sometimes may even blister. It is usually in the pattern of exposure to the food causing the reaction, such as spattering or drips from a squeezed lemon

Don’t forget basic sunscreen practices. It is important to use a water-resistant, broad spectrum sunscreen (protecting against both UVA and UVB rays) with SPF 30 or higher. The higher the SPF, the more protection, with SPF 50 giving maximal protection. Sunscreen should be applied 15-30 minutes before going outside and re-applied every two hours, but more often if the child is swimming or sweating. Throw away sunscreen that is older than three years or passed the expiration date. Don’t forget to put sunscreen on often-forgotten areas such as the tops of the feet, ears and back of the neck and scalp.

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Meet Dr. Kushal Bhakta

In recognition of prematurity awareness month, we’re highlighting Dr. Kushal Bhakta, medical director of CHOC Children’s Small Baby Unit (SBU).

Dr. Kushal Bhakta
Meet Dr. Kushal Bhakta, medical director of the small baby unit at CHOC Children’s

The Small Baby Unit – the first of its kind – opened in 2010. The special 12-bed unit within our neonatal intensive care unit (NICU) is designed for babies born at less than 28 weeks gestation or who weigh less than 1,000 grams. The space is designed to aid in babies’ development with dim lighting and low noise levels, mimicking the womb’s environment as closely as possible. The unit is also nurturing for patients’ families. Since they are going through many of the same experiences, families are able to bond and support one another.

“It’s an amazing blessing to be part of these families’ lives. So many parents write to us and send pictures long after they’ve left the hospital. There is a mutual respect, and they become part of our extended family,” Dr. Bhakta says.

Board certified in pediatrics and neonatal-perinatal medicine, Dr. Bhakta is part of a specialized, highly trained team at CHOC. He owes the success of the unit to his team, he says.

“It’s inspiring to see the team’s passion for the lives of these babies,” Dr. Bhakta says. “From nurses to respiratory therapists, and all other disciplines, everyone on the team takes care of our patients like they were their own children.”

The highly committed team is improving quality and outcomes in extremely low birth weight infants. Impressive outcomes from the two years before and four years after the SBU’s opening in March 2010 include:

  • Significant reduction in chronic lung disease of prematurity.
  • Significant reduction in the rate of hospital-acquired infections.
  • Significant reduction in infants being discharged with growth restriction . These factors are linked to cognitive and physical disabilities.
  • Reduction in the average number of laboratory tests and X-rays per patient.

Dr. Bhakta’s vision for the SBU is to be recognized nationally and beyond as the premier destination for the care of extremely preterm infants. Dr. Bhakta and his team have hosted many hospitals interested in modeling their units after CHOC’s SBU. As leaders in their field, the team hopes to continue to improve patient outcomes.

“We’ve come so far in how we treat this patient population, he says. “We don’t want to only adapt knowledge, but create the knowledge and help set standards of care for these patients.”

Dr. Bhakta received his medical degree from Baylor College of Medicine and completed his pediatric residency and neonatal-perinatal fellowship training at Baylor College of Medicine and Texas Children’s Hospital, in Houston, Texas. He later joined the faculty at Baylor College of Medicine/Texas Children’s Hospital as assistant professor of pediatrics, where he also obtained an advanced certificate in teaching through the Educational Scholars Fellowship Program.

Dr. Bhakta has received several awards throughout his career, including “Super Doctors Southern California Rising Stars” in 2014 and 2015.

In his spare time, this dedicated physician enjoys spending time with his wife and two daughters.

Learn more about CHOC Children’s Small Baby Unit.

Related posts:

  • Inside the Small Baby Unit: Ryan’s Story
    Danielle McLeod was looking forward to an easy second pregnancy and ultimately caring for her infant son as a confident and assured second-time mom. But that expectation changed when little Ryan ...
  • Neonatology by the Numbers
    November is Prematurity Awareness Month. In honor of this observance, we share an inside look at our neonatologists and services they provide to care for babies daily in Orange County. ...
  • Small Baby Unit Before and After
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Why One Grateful Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

gates-and-noah
Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

edited-christmas-stocking
Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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