Patient Care

All Articles in the Category ‘Patient Care’

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 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 »

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 »

Seattle Children’s Leads Nation in Heart Transplant Survival Rates

Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.

Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.

Children who need a heart transplant face a frightening waiting game before a donor heart becomes available. They must live with a failing heart for months, or even years, as clinicians strive to keep them healthy enough for transplant. Nationally, these patients face the highest waiting list mortality in solid-organ transplantation medicine, with 17% of children dying while waiting for a heart transplant.

Thankfully, Seattle Children’s has one of the best waitlist mortality rates among pediatric heart transplant centers, as reported to the United Network of Organ Sharing. The hospital also treats some of the region’s most complex, advanced heart disease and heart transplant cases and has one of the highest 3-year patient survival rates in the country.

“We are proud to be ranked among the best pediatric heart transplant centers in the country,” said Dr. Yuk Law, medical director of the Cardiac Transplant/Heart Failure Service at Seattle Children’s. “We have created a team of skilled experts who have dedicated their careers to treating heart failure and transplant cases.” Read full post »

Canines Comfort Kids at Seattle Children’s

Pet Therapy - Joey web version

Dudzik and Paddy visit with Joey at Seattle Children’s.

At Seattle Children’s Hospital healing comes in all forms. From music therapy to acupuncture, Seattle Children’s offers many services to comfort children while they are inpatient at the hospital. One of those forms even includes a wagging tail, wet snout and big brown eyes.

Christi Dudzik and Paddy, her 5-year-old yellow Labrador, are one of 12 dog teams at Seattle Children’s that provide comfort to patients and families through its animal-assisted activities program. Dudzik, who has been training pet therapy dogs for more than 20 years, says there’s no better place to be than with Paddy walking through the halls of Seattle Children’s. Read full post »

Starting Out Strong

Chief of cardiology Dr. Mark Lewin leads the Prenatal Diagnosis and Treatment team at Seattle Children’s. He specializes in fetal diagnosis and the ongoing care of children with congenital heart defects.

Chief of cardiology Dr. Mark Lewin leads the Prenatal Diagnosis and Treatment team at Seattle Children’s. He specializes in fetal diagnosis and the ongoing care of children with congenital heart defects.

When pregnant couples discover problems with their babies, Seattle Children’s Prenatal Diagnosis and Treatment Program helps them make some of the toughest decisions they’ll ever face.

When an ultrasound revealed a problem with her baby’s heart, Melinda Deitz – then five months pregnant – was referred to Seattle Children’s for a fetal echocardiogram – a test to pinpoint what was wrong.

Deitz could feel the baby moving in her belly as she and her husband, Rich, waited for the results. They hoped everything was OK or that the problem was easy to fix. But when they saw the look on Dr. Mark Lewin’s face they knew it was serious. Read full post »

Dr. Juul Looks Ahead as She Takes the Helm of the Neonatology Division

Dr. Sandra “Sunny” Juul recently became the new Division Chief of Neonatology at Seattle Children’s Hospital and the University of Washington, taking the helm from Dr. Christine Gleason, who stepped down to pursue other professional goals. Below, Juul talks about her vision for her own research and for the Division of Neonatology at Seattle Children’s.

Dr. Sandra "Sunny" Juul

Dr. Sandra “Sunny” Juul, the new Division Chief of Neonatology at Seattle Children’s Hospital

Neonatology is a relatively new field of medical practice, having come into its own in the 1960s. At that time, survival for extremely premature babies and many of those with congenital disorders was low. Through experience and research, infants who were previously destined to die now survive, yet their outcomes are frequently burdened by significant neurodevelopmental challenges.

As a neonatologist, I am honored to participate in the care of precious, fragile individuals ranging from extremely preterm infants to term neonates with complex medical or surgical problems. These small patients and their families humble me with their endurance in the face of great adversity.

I believe that our current mandate as neonatologists is to ensure that survivors of these previously fatal conditions can lead fully functional lives without impairment. In order to accomplish these audacious goals, we have committed, as a division, to improve neonatal outcomes by providing outstanding evidence-based neonatal clinical care, moving our field forward by conducting research, and by educating the next generation of neonatal caregivers. Read full post »