Contending with Coarctation of the Aorta: Ella’s Story

Lindsey and Oliver Nam had hoped to hold a special celebration to mark their daughter Ella’s 100th day of life – a tradition in some Asian cultures to commemorate an important milestone for a family.

But a big celebration with friends and family would need to wait.

Shortly after birth, Ella was diagnosed with coarctation of the aorta, a congenital heart defect. While the family awaited next steps, they couldn’t risk her being in a large crowd and getting sick.

“It was hard,” Lindsey says. “That’s the scariest thing to think about. You just brought them into the world and now something is wrong.”

The journey begins

Tests conducted just after Ella’s birth in December 2017 first revealed a heart murmur, an unusual sound made by blood circulating through the heart’s chambers or valves, or through blood vessels near the heart.

After two extra days in the hospital, Ella had progressed nicely and the new family of three headed home. On the horizon were follow-up medical appointments to determine whether Ella’s murmur was harmless or caused by an underlying heart condition.

At home, Ella was gaining weight, doing well and reaching milestones – so when a pediatric cardiologist made his diagnosis, her parents were surprised.

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Coarctation of the aorta means that a large artery in Ella’s heart that carries oxygen-rich blood from the left ventricle to the body was too narrow. This can restrict the amount of blood that could travel to the lower part of Ella’s body.

If the condition went untreated or the aorta didn’t widen on its own, Ella’s heart would need to work harder and harder to pump blood, leading to a possibility of stroke or heart failure.

But because Ella was healthy and doing well, the family considered alternate timelines for treatment and sought second opinions.

A big decision

When Ella was about 7 months old, though, surgery became a reality. After more tests, experts at the CHOC Children’s Heart Institute recommended Ella undergo surgery to correct the problem as soon as possible.

“It was hard to hear,” Lindsey says. “That’s when we started to get worried.”

Dr. Richard Gates, a pediatric heart surgeon and co-medical director of the Heart Institute, would perform the procedure. By working through Ella’s back, near her shoulder blade, he would widen the narrow artery.

Heading into surgery day, Lindsey and Oliver were frightened, but maintained a brave face for their daughter.

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Ella recovering from heart surgery in CHOC’s cardiovascular intensive care unit (CVICU).

“Going into it and preparing for it, I was strong,” Lindsey said. “I didn’t want her to think anything was wrong.”

The procedure went well, but Lindsey’s strong façade crumbled when she saw Ella afterward.

“The worst part was when I saw her after the surgery,” she says. “Everything was fine but seeing her sedated and with all these tubes in her – oh, my goodness. It was a lot to handle. I broke down.”

Recovering

Ella was in great hands at CHOC’s cardiovascular intensive care unit, where she spent five days recovering after surgery. By the fourth day, Ella was able to keep down milk and even ventured outside for a wagon ride. On the fifth day, the family of three headed home.

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Just four days after surgery, Ella was well enough to venture outside for a wagon ride. Here she is pictured with her heart surgeon, Dr. Richard Gates.

“It’s the best feeling ever,” Lindsey said.

Several months after surgery, Ella has had some follow-up visits and there remains a chance that she may need surgery again someday.

For now, though, she is healthy and right on track developmentally. Ella is crawling and pulling herself up on furniture, with first steps nearly within reach.

Rather than worry about the future, the Nams are mindful to focus on Ella’s happiness and health – and they’d offer the same advice to another family contending with a heart defect.

“I would just say remain calm and just take it one day at a time,” Lindsey says. “Also, do your research and try to get second and third opinions.”

Time to celebrate

The family has also been making up for some lost opportunities. In lieu of the big 100th day celebration the Nams never got to host, they went big when it came to commemorating Ella’s first birthday a few months ago.

After all, they had so much to celebrate.

“She’s accomplished so much,” Lindsey says.

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Ella’s first birthday celebration
Learn more about the Heart Institute at CHOC Children's

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Is Your Child’s Headache Cause for Concern?

When your child complains of a headache, it can be anything from a plea to stay home from school in hopes of avoiding a test, to a sign of something more serious. But how can you tell the difference? And when is it time to see the pediatrician? Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s, offers advice on what parents can do to keep headaches at bay, the importance of identifying a pattern in your child’s headaches, options for treatment, and what types of headache warrant a trip to the emergency department.

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Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s, offers advice for parents concerned about their child’s headaches.

First, it’s important to be able to identify what type of headache your child may be suffering from.

What type of headache does my child have?

Migraine symptoms in kids

At least 5 attacks that meet the following criteria:

  • Headache lasting 1 – 72 hours
  • Headache has at least two of the following features:
    • Pain on both sides or only one side of the head
    • Pain is pulsating
    • Moderate to severe intensity
    • Aggravated by routine physical activities
  • At least one of the following:
    • Nausea and/or vomiting
    • Sensitivity to light or noise

If your child has more than 15 headache days per month over a three-month period, and at least half of those are migraines, they may be suffering from chronic migraines.

It’s a common misconception to assume that only adults suffer from migraines, which isn’t true, says Dr. Taraman. If your child has migraines, they are not alone. About 1 out of every 20 kids, or about 8 million children in the United States, gets migraines. Before age 10, an equal number of boys and girls get migraines. But after age 12, during and after puberty, migraines affect girls three times more often than boys.

Tension headache symptoms in kids

  • Headache lasting from 30 minutes to seven days
  • Headache has at least two of the following characteristics:
    • Pain in two locations
    • Pressing or tightening feeling (not a pulsing pain)
    • Mild to moderate intensity
    • Not aggravated by routine physical activity such as walking or climbing stairs
  • No nausea or vomiting – many children experience a loss of appetite
  • Either sensitivity to light or sensitivity to sound
  • Tension headaches occur most often in children ages 9-12

Cluster headache symptoms in kids

  • At least five headaches that meet the following criteria:
    • Severe pain in one location: within the eye, above the eyebrow, or on the forehead, that lasts from 15 minutes to three hours when left untreated
  • Headache is accompanied by at least one of the following symptoms on the same side of the body as their pain:
    • Conjunctival injection and/or lacrimation
    • Nasal congestion and/or excess mucus in the nose
    • Eyelid swelling
    • Forehead and facial swelling
    • Droopy eyelid and/or small pupil
    • A restlessness or agitation
  • Cluster headaches usually start in children at around 10 years old

Post traumatic headache symptoms in kids

  • Acute post traumatic headache: lasts less than three months and caused by a traumatic injury to the head
  • Persistent post traumatic headache: lasts more than three months and caused by a traumatic injury to the head
  • Both acute and persistent headaches develop within one week of: the injury to the head, regaining of consciousness following injury to the head, or discontinuing medicine that impairs the ability to sense a headache following a head injury
  • Extended recovery risk factors:
    • Prolonged loss of consciousness or amnesia
    • Females
    • Initial symptom severity
    • Premorbid history of ADHD, mood disorders, and migraines

Sleep apnea headache symptoms in kids

  • Typically occurs in the morning
  • Pain is present on both sides of the head
  • Lasts more than four hours
  • Not accompanied by nausea, nor sensitivity to light or sound

Medication overuse headache symptoms in kids

  • Headaches on 15 or more days per month
  • Takes over-the-counter medication for headaches more than three times per week over a three-month period
  • Headache has developed or gotten worse during medication overuse
  • Pattern of headaches resolves or improves within two months after discontinuing the overused medication

What to do when your child has a headache

A variety of non-medical interventions can be helpful for children who are suffering from headaches. These non-medical interventions for headaches include: ice packs; warm baths; taking a nap in a cool, dark room; neck and back massage; and taking a walk.

Parents shouldn’t be tempted to immediately turn to medication such as ibuprofen or naproxen, says Taraman.  Over-the-counter pain medications (such as Tylenol or Motrin) should be limited to no more than three days per week with no more than two doses per day, in order to avoid medication overuse headaches. Follow the dosing instructions on the label and ask your child’s pediatrician or pharmacist any questions before beginning a treatment regimen. Follow dosage instructions given by your physician or pharmacist, or download a guide to ibuprofen and naproxen.

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How to avoid headaches

There are a number of things parents can do to prevent headaches, says Dr. Taraman. These include:

How to talk to your pediatrician about your child’s headaches:

Keep a journal of your child’s headaches so you can identify a pattern, and show your child’s primary care physician. If you don’t have a primary care provider, find one near you. In your headache journal, keep track of:

  • Headache start date and time
  • What happened just before the headache?
  • How much did your head hurt, on a 0-10 pain scale?
  • Where did your head hurt?
  • What did you feel just before and during the headache?
  • What did you do to make yourself feel better?
  • Did you feel better, on a 0-10 pain scale?
  • Headache end date and time

Your child’s pediatrician may adjust your child’s diet, headache hygiene routine, or their NSAID regime. In some cases, your primary care provider may refer you to a pediatric neurologist, who have specialized training in the nervous system (brain, spinal cord, muscles and nerves), who work in tandem with imaging and other specialists and pediatricians as necessary.

Patients should immediately be taken to the emergency department for some headaches including:

  • Thunderclap headache: severe, sudden onset of pain that occurs anywhere in the head, and grabs your attention like a clap of thunder. Pain usually peaks within 60 seconds to a few minutes.
  • Any headache that comes with weakness or numbness on one side of the body, or changes in consciousness or awareness.
  • Blurred, double or loss of vision that persists after the headache resolves.

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How to Help Your Child Navigate the Emotional Aftermath of a Traumatic Event

By Dr. Sheila Modir, pediatric psychology post-doctoral fellow at CHOC Children’s

It’s difficult for adults to make sense of a tragedy, so consider how difficult it can be for children. To help parents support their children as they navigate trauma either in their own lives or process a tragic event they see on the news, consider the five E’s of helping a child navigate the emotional aftermath of a traumatic event: 

  • Explore what your child already knows in a gentle and calm manner. You can start with a neutral question inquiring about how their school day was or if anything happened while they were at school.
  • Explain what has happened in a way that your child can understand based on his/her age.
    • This is the time to address any misinformation your child might have picked up at school and help them understand that a scary thing did happen, but also reassure their sense of safety as schools and adults work hard to keep their children safe on daily basis.
    • Limit information that you provide to your child to the questions that they ask you, so that you avoid overwhelming them with information that they may not already have been exposed to.
    • You can provide examples of ways you and others in your community keep your child safe every day (i.e., how when you drop them off at school in the morning and you look both ways before crossing the road, how doctors are working hard to help the children that have been hurt).
  • Express to your child that feelings are normal and it is okay to feel sad, mad or angry when a tragic event occurs. Remember to reduce media exposure after a traumatic event, as repeated exposure to the event has been associated with psychological distress and intensifying already heightened emotions.
  • Emotionally model for your child healthy expression of feelings as children take their cues from their parents. Describe how you cope with your distressing emotions to your child (i.e., When I feel scared when something bad happens to me, I talk about it with someone who makes me feel safe or I take three deep breaths).
  • Ensure stability by continuing to adhere to your child’s daily routine. This will provide them with a sense of reassurance and safety during a chaotic time. Engaging in a daily routine is not meant to ignore what has happened, rather to continue to provide the child with structure, stability, and predictability.

If you are struggling to help your child process a traumatic event, or if you feel your child could benefit from additional support, ask your pediatrician for a referral to a pediatric psychologist or psychiatrist.

Below are a few additional resources on coping with trauma that I often share with my patients and their families:

Helping Children Survive the Aftermath– Florida International University

Mobile App: PTSD Family Coach– U.S. Department of Veterans Affairs

Responding to a School Crisis– The National Child Traumatic Stress Network

Resources for Parents and Caregivers– The National Child Traumatic Stress Network

Helping Traumatized Children: A Brief Overview for Caregivers– Child Trauma Academy

Tragic Events: Parent Resources – The Fred Rogers Company

Learn more about mental health services at CHOC

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