On the Pulse

A Family’s Journey: Cleft Lip and Palate Surgery at Seattle Children’s Hospital

 

In October 2010, Heather Landis received a phone call no expectant mother ever wants to receive. At five months pregnant with their second child, the doctor told Heather and her husband Dale that the baby girl they were expecting would be born with a cleft lip and palate, birth defects that occur early in pregnancy. After the initial shock of the diagnosis, the Landis’s began preparing themselves for the difficult road that awaited them. Struggling with her emotions, Heather put what she was feeling into a candid and personal blog detailing the months before and after the birth of her daughter, Danielle.

Her blog detailed Danielle’s trips to Seattle Children’s Hospital, where Dr. Hitesh Kapadia initiated the repair process using a nasoalveolar molding (NAM) device – a non-surgical method of reshaping the gums, lips, and nostrils  of children with large cleft lips and palates prior to surgery. Following months with the NAM, the craniofacial team lead by Dr. Raymond Tse performed multiple surgeries to correct Danielle’s cleft lip and palate. Danielle is currently doing very well and her cleft lip and palate were successfully repaired by Danielle’s care team. The team’s courageous efforts, collaborative spirit, and amazing success also inspired Dale to apply for a job at Seattle Children’s, where he works today.

The Landis’ story is told in a compelling photo slideshow narrated by Heather, using entries from her months of blog posts and photos taken by the family during their difficult – but ultimately successful – journey.  

If you’d like to arrange an interview with Heather or Dale Landis, or a member of Danielle’s care team, please contact Children’s PR team at 206-987-4500 or at press@seattlechildrens.org.

Five Days, Four Heart Transplants

Heart transplant recipients (clockwise, from top left): Brooke Naab, Hannah Campbell, Batul Al-Salami and AJ Baird.

In one five-day span this September, four patients – one teenager and three critically ill infants – received life-saving heart transplants at Seattle Children’s.

For four families, the week meant the end of an agonizing wait and the start of a new life.

To perform four transplants in five days is very unusual, says Dr. Lester Permut, heart surgeon and interim chief of Cardiothoracic Surgery at Seattle Children’s. “But these are situations we train for.”

The first notification came at the end of a busy Friday: A donor heart was available for 6-month-old AJ Baird, who had spent half his short life waiting for a heart in Children’s Cardiac Intensive Care Unit (CICU).

A team from Children’s – two heart surgeons and a transplant nurse – set out immediately to get the donor heart while a team led by Dr. Permut and another heart surgeon, Dr. Michael McMullan, readied AJ at Children’s. The transplant surgery started early on Saturday, Sept. 22.

The team was finishing AJ’s surgery when the beeper went off again: a heart was available for 14-year-old Batul Al-Salami, who has been followed by the Heart Center since birth.

Then it happened again, and again, until Wednesday, Sept. 26. By then, the team had completed a total of four heart transplants – more than Children’s had ever done in a single week.

The cluster of transplants made for an exhilarating week.

“When a heart comes up for one of our patients, we’re excited about it and the energy from that sustains us,” says Dr. Permut, who traded the role of lead and assistant surgeon with Dr. McMullan for all four surgeries.

“It was a tour de force for a big group of people,” adds Dr. McMullan. “It took an incredible team and a very good system to pull this off.”

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A Serious Warning: Energy Drinks for Children and Teens

We all want our kids to lead vibrant, active lives, because childhood is such a dynamic time of discovery and participation.

But there are healthy – and unhealthy – ways to ensure that this happens.

One of my concerns right now is that caffeine is playing an unhealthy role in the diets of too many children and adolescents. Teens, for example, shouldn’t consume more than 100 mg of caffeine per day. (The recommended caffeine ceiling for adults is about 400 mg per day.)

Unfortunately, there’s a problem with certain energy drinks that exceed the Food and Drug Administration’s (FDA’s) mandated limit of 71 mg of caffeine for a 12-ounce soda.

Energy drinks are sold as nutritional supplements, so they’re not regulated as foods.  As a result, their labels often don’t reveal the exact amount of caffeine in each drink. And, in addition to caffeine, energy drinks may contain other stimulants, such as taurine and guarana, a caffeine containing plant.

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Seattle Children’s Cancer Patient Presents “Haunting: A Head” – A Halloween Video

10-year-old Jenna Gibson, a Maple Valley, Wash. resident, has been a patient at Seattle Children’s since she was initially diagnosed with acute myeloid leukemia earlier this year.

While staying at the hospital’s cancer care inpatient unit recently, she had the idea to create for her friends and family a video entitled: “Haunting: A Head” – all in the spirit of Halloween fun.

In the video, Jenna, hidden beneath a magical hospital robe that makes everything but her head invisible, can be seen on a spooky hijinks across the floor.

“I wanted to show some of the things that were frustrating but kind of funny about being in the hospital,” said Jenna. “And I wanted to use only my head because it seemed mysterious.”

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Gene Repair Breakthrough Led by Seattle Children’s Research Institute

Imagine a prowler casing a neighborhood, looking for a way into a home. That’s essentially what HIV, the human immunodeficiency virus, does:  It moves through the bloodstream trying to gain entry to T-cells — the primary warrior of the immune system. A special receptor on the T-cell’s surface (called CCR5) is the open door it seeks. Once it gains entry, the virus hampers a T-cell’s ability to do its job, leaving people vulnerable to infection and disease — and enabling HIV to spread.

Now imagine you can lock that door forever. The virus can’t enter the T-cells and interfere with the immune system and the body can fight off the infection.

Drs. Dave Rawlings, Andy Scharenberg and a team at Seattle Children’s are getting close to making that vision a reality. Working with colleagues at University of Washington and Fred Hutchinson Cancer Research Center in the Northwest Genome Engineering Consortium, they have figured out how to modify genes and knock the CCR5 receptor off T-cells.

Dr. Dave Rawlings, Dr. Andy Scharenberg (right)

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Tips for a Fun and Safe Halloween

Some would say Halloween has always been scary.

It was first called “All Hallows’ Eve,” and people believed that there were no barriers separating the world of the living from the world of the dead. As a result, many locked themselves in their homes because they feared that ghosts and demons were roaming the streets. If people absolutely had to go out, they disguised themselves in costumes.

Halloween has become a lot more fun today, peppered with costumes, sweet treats and community events.

But, if you’re a parent, it can still generate some anxiety.

To help ease any worry, Seattle Children’s would like to share some guidelines  to help you and your child have a fun and safe Halloween.  Watch the video above for additional tips and treats.

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New Procedure Improves Life for Children with Hydrocephalus

Kristin Crow got a big surprise when her little bundle of joy arrived prematurely while she was visiting family in Texas in November 2011. She gave birth to her son, Skyler Crow, who was born at 28 weeks, weighing just two pounds, seven ounces.

When in utero, Skyler had been diagnosed with ventriculomegaly, or enlarged ventricles in the brain, and he developed hydrocephalus soon after he was born while in the neonatal intensive care unit (NICU) in Texas.

Hydrocephalus is one of the most common congenital conditions in children, affecting 1 in 500 to 1,000 births. It is a condition where cerebrospinal fluid (CSF) doesn’t reabsorb properly in the brain, causing a harmful build-up. This can cause problems with the development and function of a child’s brain, and without treatment, hydrocephalus can be deadly.

The traditional treatment for hydrocephalus is surgery to implant a shunt, or a small tube, that drains spinal fluid from the brain ventricles down to the abdomen where it is absorbed. Doctors told Kristin and her husband that a shunt was their only treatment option.

“I was terrified as shunts come with a lot of risks,” said Kristin. “There’s a high rate of infections, complications and we would be in the NICU for a very long time, possibly more than five months.”

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Do You Really Need a Flu Shot Every Year?

The answer is yes. The Centers for Disease Control and Prevention (CDC) recommends that everyone who is at least six months of age should get a flu vaccine this season. 

Vaccine vials

The influenza virus constantly mutates, changing its shape and structure each and every year to survive. Therefore, in order to effectively be protected against the virus, the composition of the vaccine also changes each year. The newly formulated vaccine then adds to the immunity built up from receiving the shot in previous years.

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Restaurant Environments Improve, Sort of, Under Nutrition-Label Regulation

Buy one, get one for 1 cent.  Be a hot tamale, eat a hot tamale.  Try our new salted carmel cake pop.

We see slogans like these on billboards and at restaurants on a daily basis.  Would a nutrition-labeling regulation that requires restaurants to post calorie counts help spur a reduction in the use of these slogans, which are known as “barriers to healthful eating?”  That’s what a research team, led by Brian Saelens, PhD, of Seattle Children’s Research Institute, set out to find. The study, “Nutrition-labeling regulation impacts on restaurant environments,” is published this week in the American Journal of Preventive Medicine.

Young man looks at the menu in a fast food restaurant

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Preventing Preterm Birth Initiative New Projects Announced

Mom and Baby – India
© Paul Joseph Brown/GAPPS

Projects seek to undercover how the following conditions lead to preterm birth, low birth weight and stillbirth:

  • Malaria infections of the placenta
  • Infections of the female reproductive tract
  • Disruption of the normal bacteria and other micro-organisms of the lower female genital tract
  • Body’s receptors for progestin-based therapies
  • Infections that cause inflammation in the uterus

Dr. Kevin Kain had completed medical school and was about to embark on a career as a surgeon in Canada, but on a whim he and some friends decided to take a trip to Africa.

He ended up spending a year driving the entire length of the continent, camping along the way.  “I was immediately struck that people were dying from diseases all around me that I had never even been taught about,” he says.

He returned to North America and decided to devote his career to global health. “It seemed this incredible inequity in education about what the major burdens of disease were in the world and that we didn’t know anything about them. I got very passionate about learning about them and then wanting to do something about them.” Read full post »