Austin’s Hand to Hold starts NICU Now podcast for parents of premature babies

Parents can listen to a NICU Now podcast in the hospital while sitting with their babies. Hand to Hold
Parents can listen to a NICU Now podcast in the hospital while sitting with their babies. Hand to Hold

This month, local nonprofit Hand to Hold released a podcast NICU Now on iTunes and Stitcher.

Founder Kelli Kelley started Hand to Hold officially in 2010, but the roots of it go back to when Kelley gave birth to her son Jackson in 2000 at 24 weeks gestation. Hand to Hold connects parents of babies who are born early or are medically fragile to resources.

nicu-now-launchesThe podcast is a new way for Hand to Hold to reach more parents and make them aware of the services Hand to Hold provides such as a peer mentors and written materials about life in the NICU and what happens after you go home.

The idea for the podcast started in 2015 when Kelley received a concussion after being hit in the head by a volleyball at her daughter’s practice. She felt that queasy unsettling that comes with motion sickness or early pregnancy. She couldn’t follow a recipe or do much of anything. Her doctor prescribed her with time in bed doing nothing: no reading, no watching TV.

And so she turned to listening to podcasts after a friend who was a podcast junkie had serendipitously showed her the week before how to download podcasts. She started with listening to “Serial” but soon discovered a Radio Lab podcast talking to Tom and Kelly French, who wrote about their daughter in the book “Juniper: The Girl Who Was Born Too Soon.”

Kelley recognized that a podcast could be the way to connect more families. “This is a way for NICU family to share their stories,” she says.

Since Kelley started Hand to Hold, she says, she realized the limits of what hospitals can provide their families as many hospitals have had to cut things like social workers and support groups. “This is free and easy,” she says of the podcast.

The Neonatal Intensive Care Unit at St. David'’s Medical Center was where Kelli Kelley’s journey began. Now she’s executive director of Hand to Hold, an organization to help parents of children born prematurely or with other complications. DEBORAH CANNON / AMERICAN-STATESMAN
The Neonatal Intensive Care Unit at St. David’’s Medical Center was where Kelli Kelley’s journey began.
DEBORAH CANNON / AMERICAN-STATESMAN

Often, parents bring their phones into the NICU while they sit with the baby or into the room where they pump milk for their babies. While they are there, they could be accessing information and support through the podcast. They also could listen to it while they drive to and from the hospital. Each episode has a link to a resource guide that brings listeners back to the Hand to Hold website.

Every website talks about “demystifying counseling and being open to finding support,” Kelley says.

She knows  the toll of having a baby in the NICU. Years after her son was born, and later her daughter was also in the NICU, Kelley realized that she still had anxiety and post-traumatic stress disorder because of that time. “If that goes undiagnosed, that can impact their ability to bond with the baby,” she says.

Hand to Hold launched NICU Now with 15 episodes:

It found grant funding from Mallinckrodt Pharmaceuticals and Prolacta Bioscience and Huggies and tapped Austin musicians The Mrs. for music and Milam Film Works for production.

Early feedback has brought requests for additional topics. Kelley is hoping to get information about the podcasts and maybe even earbuds into hospitals.

Kelley also has plans for additional podcast series. NICU Heroes will be for professionals like nurses and doctor, who can listen to it on their way to work and home. She wants it to get accredited as continuing education

NICU and Beyond will be about what happens after you go home. One episode will be about Travis Eckert, who is from Austin and was in the neonatal unit. Now he’s been drafted by the Kansas City Royals baseball team.

“I want to build hope and build them up to let them know: you’re not alone,” Kelley says.

 

11-year-old Chase Johnson starts epilepsy foundation, basketball fundraiser

Chase Johnson plays basketball at his home near Dripping Springs. He's raising money for epilepsy awareness through his Chase for the Cure foundation. Nicole Villalpando/American-Statesman
Chase Johnson plays basketball at his home near Dripping Springs. He’s raising money for epilepsy awareness through his Chase for the Cure foundation. Nicole Villalpando/American-Statesman

Chase Johnson, 11, is like many boys his age. The Dripping Springs-area fifth-grader loves karate and basketball. He’s unlike most fifth-graders in that this year, he started his own foundation. Chase for the Cure tries to raise awareness about epilepsy as well as send kids to Camp Brainstorm, a one-week camp in Rockport for children ages 8-17 who have epilepsy.

The idea came from Chase because he knew students in school were learning about “all the popular diseases” like cancer and diabetes. “No one ever talked about epilepsy or asthma.” He wanted to know why that was.

Chase for the Cure is holding its first big fundraiser, the Hoop-a-thon and Skills Challenge on Oct. 22. At the event people can pledge to donate or get friends to donate money for each basketball basket they make in five minutes. People in sixth-grade and older can participate in a basketball skills challenge tournament and kids kindergarten through fifth grade can improve their skills at a clinic. Of course, there’s also a silent auction.

All the money will go toward helping send more children to Camp Brainstorm, which costs about $900 per kid, and to help Epilepsy Foundation of Central & South Texas raise awareness. Chase is also speaking at elementary schools in the Dripping Springs school district about epilepsy and the Hoop-a-thon.

Chase and his parents Kelly and John Johnson have begun talking about epilepsy. Chase will talk at school assemblies at Dripping Springs elementary schools. Johnson Family photo
Chase and his parents Kelly and John Johnson have begun talking about epilepsy. Chase will talk at school assemblies at Dripping Springs elementary schools. Johnson Family photo

Close friends know that Chase has epilepsy, as do his teachers, but most of his classmates don’t. Chase knows the statistics he got from the National Epilepsy Foundation: 1 in 26 people will develop epilepsy sometime in their lifetimes. In kids, it’s about 1 percent of all kids or 10 kids in 1,000. And while, his family has been told unofficially there are four kids at his school with epilepsy, they believe there’s probably even more.

Chase’s doctor, child neurologist and epileptologist Dr. Karen Keough, of Child Neurology Consultants of Austin, says epilepsy can be “a very stigmatizing diagnosis. There are many, many children with epilepsy… There’s so much epilepsy in children, it’s right under everybody’s noses.” Children who are on medicine for epilepsy often won’t have the grand mal seizure that you see in movies. “They’re more likely to have subtle seizures and might not be aware of them,” she says. “If you don’t know what they are looking for, you don’t know it’s epilepsy. It’s ‘that was weird. Why does that child do that?'”

Epilepsy also looks different for every kid. “Typical is not a good word to use in the world of epilepsy,” she says. “There’s so much variation.”

Epilepsy typically is first seen in infants or when the child is a toddler, Keough says. Usually new cases don’t happen when kids are in elementary school, but the risk of developing it goes up as puberty starts, she says. The other group of people that get newly diagnosed commonly are seniors.

 

Chase was diagnosed when he was 3. He didn’t have a grand mal seizure. Instead his seizures started in his face. He felt like his face and mouth were tingling. Now, if he’s awake, he can feel it happen because his jaw locks up.

Chase started on medication and tried many different kinds to control his seizures, which mostly happen at night. Father John Johnson even hooked up a motion-censored camera in Chase’s bedroom to record the seizures.

About two-thirds of otherwise healthy kids with epilepsy can manage their epilepsy on medication and about 80 percent of those otherwise healthy kids will outgrow epilepsy, Keough says.

Chase Johnson had to do a five-day seizure study at Dell Children's Medical Center. He kept up with his school work by Skyping with his class. Johnson Family photo
Chase Johnson had to do a five-day seizure study at Dell Children’s Medical Center. He kept up with his school work by Skyping with his class. Johnson Family photo

Chase isn’t one of those. More than a year ago, he got a vagus nerve stimulation device, which some people call a pacemaker for the brain. Every 1.1 minutes the device in his chest sends a pulse for 14 seconds up a lead wire in his neck that touches the vagus nerve. That nerve runs from his brain stem to his abdomen. The pulse helps the affected part of his brain regulate his epilepsy. That combined with medication has reduced the number of seizures Chase has.

Chase knows when the device goes off and you can hear it in his voice, which gets gruffer, every time it fires. Other than that, which you would have to know about to pick up on that it was happening, Chase looks like a normal kid and seems like he has a pretty normal life.

Except, there is always the fear that he could have a big seizure again. The biggest danger of seizures is injury. In the United States, the most common causes of epilepsy death is drowning while having a seizure in water or a head injury from a fall, says Keough. (In the rest of the world, it’s falling into a fire.) Sometimes epilepsy that is not controlled leads to something called Sudden Unexplained Death in Epilepsy. Their heart stops in a seizure, Keough says.

Seizures also can damage the brain. The Johnsons know that Chase already has some memory difficulties, specifically in short-term memory processing. It just means that Chase needs to hear things more than once to retain it. “He has incurred some challenges,” John Johnson says. Though both his parents say that Chase has been lucky because they caught it early, before a big seizure and they have been able to regulate it with medication and the VNS device. Keough has told them not to be fooled that a big seizure won’t happen.

The lack of predictability of when a seizure is going to happen makes living with epilepsy hard. You can’t say, “I’m going to stay home on a Friday night because I know I’m going to have a seizure,” she says. “It happens at random,” she says. “And that’s hard to accept.” Doctors do know that two things might cause an increase in seizures: a fever or an infection.

For Chase, that means when he’s swimming, someone always has their eyes on him, which of course, he finds annoying, but he knows why that is.

While his parents worry, of course, about what will happen if he has a big seizure, Chase is more worried about making his next epilepsy presentation. “I’m nervous,” he says. “What if I mess up in front of the whole school?”

“He’s not shy about this,” says Mom Kelly Johnson. “He’s the best Chase you could have.”

What Chase wants you to know if you witness a seizure (from the back of his Chase for the Cure bbusiness cards):

Do:

Call 911.

Make a note of the time.

Cushion the head.

Remove the glasses.

Loosen tight clothing.

Turn the person on their side.

Don’t:

Panic.

Put anything in their mouth.

Hold them down or restrain them.

Try to move them.

Put water or another liquid in their mouth.

Chase for the Cure Hoop-a-thon and Skills Challenge

When: 1-5 p.m. Oct. 22

Where: Dripping Springs High School gyms, 940 W. U.S. 290, Dripping Springs

Cost: $5 to participate in the Hoop-a-thon; $15 for skills challenge participants

Registration and information: chaseforthecure.net

 

 

 

 

Like Dory’s parents in “Finding Dory,” give kids words to explain their illnesses or differences

"Finding Dory" gives parents a reminder on how to talk to their children about differences. Pixar/Disney via AP, File)
“Finding Dory” gives parents a reminder on how to talk to their children about differences.
Pixar/Disney

The opening scenes of Pixar and Disney’s “Finding Dory” shows Dory’s parents practicing with young Dory how to tell her fish friends about her short-term memory problem. They want to give her independence and push her to go play with the other fish.

Often parents of children who have learning differences or mental or physical illnesses find themselves in this situation: trying to give their children the right words to explain to the outside world what has become a big part of their lives.

We asked experts — Dr. Sonia Krishna, child and adolescent psychiatrist at Seton Mind Institute; Dr. Shimona Thakrar, director of inpatient pediatrics and newborn nursery for Baylor Scott & White Medical Center, Round Rock; Dr. Lindsay Elton, pediatric neurologist with Child Neurology Consultants of Austin; Kelly Wagner, child life specialist at Dell Children’s Medical Center of Central Texas; and Robyn Moyer, child life specialist at St. David’s Children’s Hospital — how they help children explain their conditions and become advocates for themselves in social and school settings.

All of them said it depends on the age of the child and the child’s comfort level, as well as what the medical, mental or learning difference is, but many of them have had kindergartners and first-graders who are able to clearly articulate their illness or learning difference to their friends.

Here are their suggestions:

Be honest with your child about the disability or diagnosis. Don’t try to sugarcoat it. Don’t promise that they will just have to do this series of treatments and then be done. You can’t guarantee that will be true. If additional treatments or therapies are needed, you don’t want to have a child refuse to do them because you didn’t keep your promise. It also turns your children into liars to their friends when they have more treatments to do.

Ask for honesty back. Teenagers especially like to hide what they are feeling or problems with their bodies because they just want to be like everyone else. Sometimes younger kids might be overly dramatic about their illness. Honesty is really important.

Make your child a partner in her care. Yes, you will still be the parent making the ultimate decisions, but have your child be involved in understanding what’s wrong, what the treatment is and what will happen if it doesn’t work. Be calm and reassuring, but also be honest, too. Don’t believe your child is too young to understand. Be wary of a doctor who wants to just talk to the parents and not talk to the child as well.

Dr. Sonia Krishna is a child and adolescent psychiatrist at the Seton Mind Institute.
Dr. Sonia Krishna is a child and adolescent psychiatrist at the Seton Mind Institute.

Give your child age-appropriate language. Younger children don’t need to have to explain big medical terms or how the body works in detail because their peers won’t understand what they are talking about. A child that has diabetes might start by explaining that she has too much sugar in her blood, which makes her sick. Later she might explain that her pancreas doesn’t work and she has a pump to do the work of the pancreas.

Don’t hide the illlness or different, but not everyone needs to know either. Some illnesses, like mental illnesses, might come with a stigma. Your child might not be ready to let everyone know what is going on or might w

 Dr. Shimona Thakrar, director of inpatient pediatrics and newborn nursery for Baylor Scott & White Medical Center
Dr. Shimona Thakrar, director of inpatient pediatrics and newborn nursery for Baylor Scott & White Medical Center

ant to give some details but not tell everything. Respect that. It’s OK to for her to say that she went to a hospital to get better and not say that it was for mental illness or addiction. Don’t let her lie either.

Use positive words. “Special” has become stigmatized. Use phrases like “this is what makes you unique” or “everyone is an individual with differences.” And really, today when many kids have a medical or learning diagnoses,

everyone really is different. Everyone has things they are are strong at and everyone has imperfections. Play up the strengths that come out of this illness such as the ability to give himself shots or the ability to memorize when reading is hard. Sometimes the negative can come with positives.

Don’t forget about talking to the child’s siblings. Often they have their own worries and concerns. Often they start acting out when the attention gets focused on only the sick child. Child life specialists can help you work through this as can support groups. If siblings will have to go to a lot of appointments with you, give them things to do at those appointments as well as create their own special time that doesn’t revolve around their sibling.

Enlist experts to help. Child life specialists and nurses will often go to children’s schools to explain to teachers and students the situation. They can help ease other children’s fears and satisfy curiosities without all the explanation relying on your child or you.

Find a support group for your child and for you. Not feeling so alone, being able to talk to people who have been down this road before can be very helpful and go a long way in not feeling like an oddity. Also check if the illness has a specific summer camp or a charity walk that will give an opportunity to connect with a supportive community.

Dr. Lindsay Elton, pediatric neurologist with Child Neurology Consultants of Austin
Dr. Lindsay Elton, pediatric neurologist with Child Neurology Consultants of Austin

Be sure you can deal with your emotions. Often parents become very busy worrying about their children and forget about themselves. Getting your own counseling, your own support group can be essential. Make sure to maintain friendships and interests and practice self-care. Don’t forget about setting aside family time and couple time, too.

Talk to school and put resources in place. Find out if your child qualifies for a 504 plan or an individualized education plan or maybe even homebound education services, in

Robyn Moyer, child life specialist at St. David’s Children’s Hospital
Robyn Moyer, child life specialist at St. David’s Children’s Hospital

which a teacher comes to the hospital or your home. Make sure your child is involved in what accommodations they will receive and what is not in the accommodations. Talk to your child about being an advocate for getting those accommodations such the use of a computer, physical education adaptations, and oral or written instructions. As children get older, they should be in those 504 or special education meetings. Also, make sure teachers, not just the school nurse, knows about the need for life-saving tools like an epi pen, an inhaler or glucose gel and where those tools are stored. The more people know, the safer your child will be.

Consider making cards that your child can hand out to classmates or to adults to explain the disease or disorder. Cards limit a child’s need to constantly explain or answer the same questions again and again.

Watch for bullying and report it. Work with the school, but also work with the parents of the bully to try to give them the words to explain to their child about your child.

Do not make the child’s life only about the disease or the difference. Play up their strengths and talents. Make sure their schedule has more than medical and therapy appointments in it. Continue to make them a member of the family that has responsibilities (chores, expectations), too, and not just the person who everyone cares for all the time.

Remind your child that none of this is his fault. This is how he was made and it’s just part of him, like being that amazing dancer or that awesome artist.