On the Pulse

VADs 101: Lifesaving Heart Devices

The language of medicine is full of complicated words and acronyms. For parents of children with serious heart conditions like congenital heart disease or pulmonary hypertension, one such acronymn that may incite fear or worry is hearing that their child may need a device called a VAD (Ventricular Assist Device). However, these devices, combined with Seattle Children’s Heart Center’s medical expertise, save the lives of many children and teens each year.

What is a VAD?

A ventricular assist device (VAD) is a mechanical pump a surgeon implants inside or outside a child’s chest and connects to the heart during open-heart surgery. A VAD can be used for patients waiting for a heart transplant or for patients whose heart muscle needs to rest. Seattle Children’s has a variety of VAD options for patients large and small, from tiny babies to young adults, which aren’t available at every hospital. VAD options at Seattle Children’s include the Berlin Heart, CentriMag and PediMag centrifugal pumps, HeartMate II, Heartware HVAD and SynCardia Total Artificial Heart (TAH).

The newer, fully implantable VADs like the HeartMate II, Heartware HVAD or TAH can also greatly enhance the quality of life for many patients who are awaiting a heart transplant, often allowing them to leave the hospital. For one such patient from Hawaii named Julie Kobayashi, her implantable VAD even allowed her to leave the hospital while she waited for a heart and achieve her dream of playing in the snow for the first time.

To learn about each type of VAD, watch the video above as cardiac surgeons Dr. Jonathan Chen and Dr. Michael McMullan explain the many types that Seattle Children’s offers, and why it’s important to choose the device that best matches a child’s needs.

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How to Handle a Difficult Prenatal Diagnosis

Whether it’s a parent’s first or fourth child, pregnancy can be filled with equal parts excitement and anxiety. Expectant parents can opt for their doctors to perform a variety of prenatal tests to screen for genetic abnormalities or birth defects while the baby is still developing. If these screening tests come back positive, parents are referred to genetics counselors like me to learn more about their diagnostic testing options. A diagnostic test can be done to confirm if your baby does or does not have the condition. Depending on individual circumstances, some families pursue diagnostic testing during a pregnancy while others elect to pursue testing after the baby is born.

Once a diagnosis is made, families can meet with specialists to learn more about both short and long term care for their baby.

Seattle Children’s Prenatal Diagnosis and Treatment team sees families every day who recently received unexpected prenatal test results. These families come to us with questions and may feel anxious about next steps. We’re here to help give parents the information they need to prepare for the future. Read full post »

Study Aims to Increase the Life of Organs After Transplant, Uses High-Tech Pill Box

Jack sits with his uncle who donated his kidney to him.

Jack sits with his uncle (right) who donated his kidney to him.

It can be hard enough to remember to take a multivitamin every day; imagine having to take 20 pills at specific times throughout the day, every day, for your whole life. That’s the reality individuals who have undergone an organ transplant must face. In order to stay healthy and to keep their bodies from rejecting their transplanted organ, a myriad of medications must be taken daily, including immunosuppressants. It can be a difficult pill to swallow, especially for teenagers.

According to research studies, adolescents have the worst outcomes after transplant out of any age group. Adolescents also have the highest rate of non-adherence, which means they either decide not to take their medication or just plain forget, which can lead to the rejection of the organ.

“You can imagine taking that many medications every day could get a little old. It’s a major burden to put on a teenager,” said Dr. Jodi Smith, medical director of kidney transplant at Seattle Children’s Hospital, and a researcher with the Center for Clinical and Translational Research (CCTR). “They were not meant to have this much stuff going on in their life. But if you don’t take your meds, you’ll eventfully need another kidney transplant, and once you lose one it’s harder to get another.” Read full post »

Study Predicts Which Children with Craniosynostosis Most Likely to Suffer From Learning Deficits

After Olivia Bush was diagnosed with single-suture craniosynostosis at just 3 months old, her parents did not know how the condition would affect her brain development over time. A new study led by Seattle Children's is addressing these concerns.

After Olivia Bush was diagnosed with single-suture craniosynostosis, her parents did not know how her brain would develop over time. A new study led by Seattle Children’s is addressing these concerns.

Seattle Children’s researchers have published the results of a 10-year, multi-site study tracking the cognitive development of children with single-suture craniosynostosis from infancy to school age. The results could help families and clinicians better predict which children with this condition are at greater risk of having learning deficits so that they might intervene early in the child’s life.

The study, published today by the American Academy of Pediatrics and titled “Intellectual and Academic Functioning of School-Age Children with Single-Suture Craniosynostosis,” reported children with single-suture craniosynostosis, on average, were more likely than children without the disorder to have learning deficits once they started school. However, despite this trend, a little over half of the children with single-suture craniosynostosis showed no discernible learning problems.

Living with the unknown

The research is significant for parents like Cindy and Todd Bush. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly. Craniosynostosis occurs in approximately one in 1700-2500 live births. Corrective surgery to restore the suture is preferentially performed in the first year of life. Read full post »

Possible Link Between Phthalates & Reproductive Health of Male Newborns

A study released today, co-authored by environmental medicine expert Dr. Sheela Sathyanarayana of the Seattle Children’s Research Institute Center for Child Health, Behavior and Development, reports male infants whose mothers were exposed to chemicals called phthalates during pregnancy may have a greater risk of future infertility and other reproductive health issues.

The study, published in the journal Human Reproduction, included over 700 infants and demonstrated that even at low levels, environmental exposure to these common chemicals can adversely affect male genital development, which in turn may impact male reproductive health later in life. Read full post »

Seattle Children’s Aims to Partner With Medical Industry to Develop Pediatric Therapies

Dr. Elizabeth Aylward is director of Seattle Children's Research Institute's Office of Science-Industry Partnerships.

Dr. Elizabeth Aylward is director of Seattle Children’s Research Institute’s Office of Science-Industry Partnerships.

While there are approximately 10,000 children in the United States living with lupus, a lifelong disease that causes inflammation throughout the body, there are currently no U.S. Food and Drug Administration (FDA) approved medications to treat these kids, forcing physicians to prescribe medications that are approved for adult patients but may not be appropriate for developing bodies.

It’s a problem that impacts all areas of pediatric medicine. In 2013, the FDA in total approved 27 new drugs; just seven of these were approved for pediatric use. Of the 55,000 clinical trials conducted between 2005 and 2010, only 9% were designed for children.

“Funding for pediatric research lags disproportionately behind research funding for adult diseases. Thirty percent of the U.S. population is under the age of 21, and yet only 6% of the entire National Institutes of Health’s budget is devoted to pediatric medicine and care,” said Dr. Jim Hendricks, president of Seattle Children’s Research Institute. “This gap results in limited development of new therapies for children, who now often have no other choice than to use adult-only tested medications.”

Seattle Children’s is hoping to bridge the gap between promising research and potential treatments and cures for pediatric diseases by partnering with drug manufacturers and biotech companies through its new Office of Science-Industry Partnerships. Read full post »

Video Game Addiction: How Much is Too Much

Last month, Time reporteCommon_Signs_of_Video_Game_Addictiond on the death of a 32-year-old Taiwanese man who suffered heart failure after an apparent three-day video game binge. Over the past several years similar stories have come to light, and as the scientific research into the effects of video games on the brain continues to increase, many parents may be wondering just how concerned they should be about video game addiction.

Though the Diagnostic and Statistical Manual of Mental Disorders (DSM) does not definitively classify compulsive gaming as a disorder, according to Dr. Cora Breuner, a pediatrician at Seattle Children’s Hospital, this doesn’t mean that parents shouldn’t worry.

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3-D Printed Heart Model Makes Complicated Surgeries Possible

Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.

Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.

Kami Sutton, 26, who you met last week, has been waiting for a heart transplant for five years. But surgeons at Seattle Children’s and University of Washington Medical Center (UWMC) are now preparing to perform a difficult surgery that could greatly improve her quality of life and may even eliminate her need for a transplant. It’s possible for the first time ever, thanks to a new, realistic heart model created with 3-D printing. Read full post »

Kami Shares her Congenital Heart Defect Journey, Reflects on Her “Home”

In honor of Congenital Heart Defect (CHD) Awareness Week, 26-year-old Kami Sutton wanted to share her journey that began at Seattle Children’s the day she was born.

26-year-old Kami Sutton

26-year-old Kami Sutton

Seattle Children’s is my home. From the previously trademark blue bubble letters, the giraffes (which were recently replaced in the remodel), trains and Mickey Mouse – it is home. It is full of the people who I have trusted with my life since before I can even remember.

I was transferred to Seattle Children’s from a local hospital on Sept. 21, 1988, at only four hours old after being delivered via emergency C-section. I was blue and unable to breathe on my own. My parents were told I most likely would not survive the 30 minute trip down I-5 to the hospital. Read full post »

Seattle Children’s Takes Cleft Training Program to Africa

The first thing Dr. Michael Cunningham noticed was the crowding. Hundreds of African mothers and their young children, pressed shoulder to shoulder in a time-worn hospital’s hallway, waiting patiently for hours — if not days — to receive cleft lip and palate care for their child. It was then when he fully understood the importance of his goals in Africa and how much work lay ahead.

Cunningham, who is medical director of Seattle Children’s Craniofacial Center, and the Center’s surgical director Dr. Richard Hopper, had traveled to Africa as part of a specialized cleft training program they co-founded in 2007 now called Partners in African Cleft Training (PACT). Read full post »