CHD in the News 

Pediatric Heart Network sites to focus on improving outcomes for babies born with congenital heart disease

ANN ARBOR, Mich., Aug. 19, 2011 /PRNewswire-USNewswire/ --

The University of Michigan Congenital Heart Center has been selected as a new Pediatric Heart Network core site for clinical research. Created and funded by the National Heart, Lung, and Blood Institute, part of the National Institutes of Health, the Pediatric Heart Network is a cooperative network of pediatric cardiovascular clinical research centers that conducts studies in children with congenital or acquired heart disease.

Researchers will receive $2.25 million over five years to help develop and lead clinical trials designed to improve outcomes for children with congenital heart disease. Richard G. Ohye, M.D., associate professor at the U-M Medical School Department of Surgery and co-director of the Michigan Congenital Heart Center and Caren S. Goldberg, M.D., clinical associate professor in the Department of Pediatrics and Communicable Diseases, will serve as primary investigators. They have worked with the Pediatric Heart Network on two prior studies focused on the best surgical options for children with hypoplastic left heart syndrome.     

"This grant will enable the Congenital Heart Center to continue to track the progress of children born with hypoplastic left heart syndrome and help us determine the best treatment , which we will then share with other heart centers to provide the best possible care for these children," Ohye says. "This award recognizes the Congenital Heart Center's strong commitment to become international leaders in developing therapies to improve child health."

The Michigan Congenital Heart Center will function as one of nine core sites across the nation and Canada that will be co-recipients of $19.6 million core clinical center funding allocated by the Pediatric Heart Network. The U-M program was selected for its history of successful pediatric cardiac research and its leadership in ongoing Pediatric Heart Network endeavors including the Single Ventricle Reconstruction trial and Single Ventricle Reconstruction Extension Study.

The Pediatric Heart Network is a group of hospitals in the United States and Canada that conducts research studies in children with congenital or acquired heart disease. Congenital heart defects occur in approximately 40,000 infants in the U.S. each year and are a major cause of infant death. Acquired heart disease can cause death and long-term disability.

In the past 25 years, fewer than 40 randomized clinical trials have been done in patients with congenital or acquired heart disease. There are several reasons for this. Many hospitals or single doctors do not see enough children with any one type of heart disease in order to perform certain studies and have meaningful results. Parents have been unable to enter their children into studies because they are not aware of them, they don't live near a research site or may have reservations about enrolling their child.

"By building a community between highly-esteemed research institutions in Michigan, across the country and Canada, we are able to work together to ensure better outcomes for children with cardiac diseases," Goldberg says.

The Pediatric Heart Network was started in 2001 by the National Heart, Lung, and Blood Institute to study problems in children with heart disease. Nine studies have been done since 2001 at children's hospitals with research teams that specialize in the care of patients with heart disease. All centers do the same studies. This helps to increase the total number of patients needed for each study.

About C.S. Mott Children's Hospital:

The University of Michigan C.S. Mott Children's Hospital is consistently ranked as one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in the U.S. News Media Group's 2011 edition of "America's Best Children's Hospitals" including third in the country for heart and heart surgery. In November, the hospital moves to a new 1.1 million square feet, $754 million state-of-the-art facility that will be home to cutting-edge specialty services for newborns, children and women.

About the U-M Congenital Heart Center at Mott Children's Hospital:

As an international referral center for children with complex congenital heart problems, Michigan Congenital Heart Center at C.S. Mott Children's Hospital is the second largest congenital heart program in the United States. Our pediatric specialists perform over 850 cardiac operations each year -- from the most common to the most complex -- and maintain a 95% survival rate. U.S. News & World Report ranks C.S. Mott Children's Hospital 3rd in the nation in children's heart care and heart surgery.

SOURCE University of Michigan Health System

 www.prnewsrire.com 

Sharing our Journeys 

Share your story with It's My Heart! We want to hear about your Heart Journey. Your story may be selected to be highlighted in our monthly national newsletter! Just send us your story written in a few paragraphs-be sure to include your (or your child's) diagnosis (how and when), your treatment plan, and an update on how you (or your child) is doing now. Please send a picture to go with your story and submit it at heartstories@itsmyheart.org.

Follow Us on the Web 

Heart Journey

This Heart Journey is told by Joshua's mother, Amy:

In September of 2009 Hurricane Ike made it's fierce landfall in Texas, leaving most Houstonians without water, electricity, or cable.  It was a tough time for Houstonians for weeks to follow while power was being restored to homes in a city of 4 million.  We were lucky, as our electricity was restored the day after the hurricane.  However, you couldn't get out, shop, or do anything.

What's interesting about these situations is that there is a baby boom nine months later & they are deemed "Hurricane Babies".  I guess when the power is out, and you're stuck at home, there isn't anything better to do than procreate.

My husband, Joe & I were thrilled to learn that we would be having a Hurricane Baby.  Our second child was due nine months later - almost to the date.

Friday, June 12, 2009 was our big due date.  I was scheduled for a c-section on Monday, the 15th, but I begged my doctor to at least allow me to go into labor on my own.  And I did.  On Saturday afternoon I started feeling contractions.  By 11 pm, after a day of tracking my contractions, I was certain this was the real thing.  I went to the hospital & it was confirmed.  I was so grateful to have the chance to go through 9 hours of labor before being wheeled into the OR.

On Sunday, June 14, 2009 at 1 am, Joshua Barish Weisman was born.  He was perfect.  Ten fingers, ten toes, dark brown hair, and blue eyes.  He was entirely everything we had dreamed he would be.

 We were in heaven.  We introduced our 2 year old, Ben to his brother, and had our first photo taken as a family of four. Joshua was checked in the nursery by our amazing pediatrician, Angela Chia, of Fannin Pediatrics that Sunday.  He underwent all of the standard newborn screening tests.  The next day, as I sat in my room with Josh alone, Dr. Chia came in to check him again.  Being the incredible doctor that she is, and recalling her daily visits when we had Ben, I was not at all alarmed to see her, though I found it a bit curious to see her in the morning, as she usually came in the evening after the practice closed.

The first thing Dr. Chia did was unwrap Josh from his swaddle & listened to his heart with her stethoscope.  And she listened, and listened... moving the stethoscope, listening intently.  My heart began to sink a little.

As she removed her stethoscope, I asked, "Is everything okay?"'

Dr. Chia:  "Joshua has a heart murmur."

I breathed a sigh of relief.  "Oh, okay.  A lot of people have heart murmurs.  It may run in my family because I have one & so does my brother."

Dr. Chia:  "I'm ordering a chest x-ray and an echo cardiogram of his heart, just to be on the safe side."

I said, "Okay, whatever you think we need to do."

I called my husband & mom.  I told them what was going on.  I talked myself down from the ledge thinking, "This kind of thing is just a precaution.  He will come back, and the doctors will say that everything is fine.  I'm not going to panic over this.  It's just a precaution."  Soon, Josh left for his testing.

An hour later, the phone rang in my hospital room.  Joe answered.  I watched his face grow ashen.  He put his head in his hand, listening to the person on the other end.  Now I was afraid.  "What's going on?  Who is it?  Joe!  What's going on?"  Joe handed me the phone.  It was Dr. Chia.  She was calm, but I could hear the serious concern in her voice.  "Amy, Joshua is sick.  There is a problem with his heart.  He will not be coming back to your room.  He is going to the level 3 NICU to start emergency medication to keep him alive.  There is a risk with this medication that he could stop breathing.  I've called Texas Children's Hospital (TCH), and they are on their way to get him, because they can handle his case there.  He has a coarctation of the aorta."

It was, and remains, the worst moment of my life.  I had to write down and ask her to spell this deadly condition Josh had.  Before long I was pacing my room like a caged tiger.  Joe & I called our mothers & they were on their way.  I paced, I cried, I wondered what to do.  I needed to get to Josh.  If we would lose him, it had to be in my arms.  I was terrified thinking that he was without Joe, my mom, or me.  Strangers were frantically trying to save him, and I had no idea where the NICU was or how to get there.  Finally the chief of Neonatology at Women's Hospital came in.  He explained again Josh's condition, and also that they could not handle the severity of Josh's case there, and he would be transported to TCH, right down the street.

He led us through what seemed a never-ending corridor, up and down elevators, to a small hallway, with a security door.  We were buzzed into another room where we scrubbed in.  I was finally wheeled to my son's bedside.  I got up to find that Josh was already covered in tubes, wires, leads, and my worst nightmare was playing out before me.  I frantically signed release paperwork that I did not read, to allow his transport to TCH.  My mother had finally arrived as emergency personnel began his preparation for transport.  We said goodbye to him, and went back to my room.  Joe's mom, Jackie was there.  As I heaved my heavy body from the wheel chair, she held me as I sobbed.  I could feel the terror in her embrace.

Joe & Jackie left to follow the ambulance to TCH.  Mom & I paced.  We paged my OB/GYN.  Mom asked if I wanted to call my sister.  I couldn't do it.  I couldn't bring myself to tell her that her brand new nephew was critically ill, and that we may lose him before she ever had the chance to see him.  Mom said, "She will want to come down.  What do you want me to tell her?" (my sister lived in Dallas).  I told mom that my sister needed to get on a flight.  I wanted her to see him before the unspeakable happened.

When we finally arrived at TCH, my child was in the level 3 NICU, and TCH cardiologists had performed their own chest x-rays, echos, and blood labs.  We were waiting for the cardiologist on call to come speak to us.  As we waited, I sat next to Josh's warmer.  I prayed to God to please not take my baby.  I asked the nurse about all of the lines, tubes, leads, and IVs.  I needed to know what it all was.  What it was for.  But what I needed to know most of all is if Josh would live.

By 11pm my sister had arrived from Dallas & was in the NICU, suitcase and all.  The emotion in her eyes could not have been more sincere.  I know she tried to hold back tears.  Finally the cardiologist arrived.  She sat next to me, and as my family gathered round to listen, she explained that there were more problems with Josh's heart than the coarctation.  She drew a picture of a normal heart.  Then a picture of Josh's heart.  She explained that he had a very rare condition called Shone's Syndrome.  She drew four areas of malformation on the picture of Josh's heart.

In the next week, we waited at Josh's bedside.  Our rabbi came to be with us.  Our family came to see Josh.  It was not an easy sight.  He had been moved to B pod which is known as "Cardiac Row".  

 Joshua had his first surgery to repair the severe coarctation of the aorta at just one week old.  He was able to come home, miraculously at three weeks old.

For the next several months we were in and out of TCH for check ups, echos, and was admitted on a few occasions to start Lasix.  We were watching and waiting to see if his aorta, which was still had some  stenosis would grow with him, or if he would need another surgery.

I got use to being at TCH.  I knew my way around the cardiac floors.  It was a home away from home for his first year.  At 7 months, Dr. Macicek had to deliver some bad news.  Josh's aorta was not getting better, rather worse.  Doctors Macicek and Niche told me that Josh would need another surgery.  This time instead of a thorocotomy, Josh would need open heart surgery.  My heart sank.  I imagined the heart lung bypass.  The thought of Josh's heart being stopped flooded my mind.  I began to cry.  I felt terribly for Dr. Macicek.  He had been with Josh since the day he arrived at TCH.  It had to be difficult for him too.

At just before his 8 month birthday, Josh underwent open heart surgery for another repair to his coarctation.  Surgeon Jeffery Heinle performed his first and second surgery.  He is one of the best congenital heart surgeons in the world.   This surgery was far more complex than the first.  Though the surgery was a success, Josh suffered several complications afterward.  He was in the CVICU longer this time, to manage his difficulty breathing and a strider caused by temporary paralysis of one of his vocal cords.

Now, at age 2, Josh is the picture of health.  He runs, he plays, he loves the beach, he does everything any other 2-year-old child would do.  He sports a scar down the length of his beautiful chest, and one under his left shoulder blade as reminders of what he has been through.  I notice people at the beach looking at his scars, likely wondering what happened.  I'm always happy to explain it to them because Josh is a survivor.  I am proud of his scars for that reason.  We celebrate his surgical anniversaries because he is a fighter.  We thank God for him everyday.  Now, it's hard to believe I ever thought we could lose him.

Josh will never have a normal heart.  He still has a bicuspid aortic valve, sub-aortic valve stenosis, and mitral valve stenosis, which the cardiologists watch carefully.  We don't know when his next surgery will be, but I know that my son is a fighter, a survivor, and my little superhero.

Joshua as a newborn

Joshua today with his mother, Amy

CHD in the Media

PUEBLO, Colo. -- Mike Tittinger, 40, is walking coast-to-coast to fulfill a promise. His wife died after a failed heart transplant a decade ago. That's when he promised himself that he would help others who are going through what his wife did."You don't have to be a super athlete to do what I'm doing," said Tittinger.

Tittinger's wife, Deanna, was diagnosed with cardiomyopathy, a congenital heart defect. Deanna waited for months to get a heart transplant in 2000, but Tittenger said during that time her condition worsened to a point of no hope.Doctors had told Deanna as a child that she would not live beyond her teen years, but she lived until age 30.

Tittinger started his walk on June 18 in San Francisco. He said he plans to walk to Ocean City, N.J., where he spread his wife's ashes in December of 2000.The cross-country journey is motivated by two goals.First, Tittinger said he hopes to raise awareness about organ donation. He pointed out that his choice to walk Highway 50 is symbolic because one organ donor can change the lives of 50 people.Second, Tittinger has created a scholarship for families of heart transplant patients. It is called the Onny and Oboe Scholarship Fund. The names come from two imaginary friends that Deanna had as a child."I just like to think that they were more than imaginary. That they were sent to keep a sick child company and playing and laughing," said Tittinger.

Tittinger has since remarried and said his wife, Brooke, helped him create the scholarship fund. He said he considers his walk "a celebration, not a memorial.""Our motto is 'a second chance to live is a second chance to dream,' " Tittinger said.

Story from KRDO in Colorado Spring, Colorado.  

CHD Legislation 

Feds urge wider use of heart test on newborns

This story was featured on CBS's The Early Show last week. This article is from CBS News. Please click here to see the accompanying video. 

Congenital heart defects are the leading cause of birth defect-related deaths. But what if a simple, one-dollar screening test could help save thousands of newborns' lives? Such a test exists, but it's not done routinely in the United States.

CBS News Medical Correspondent, Dr. Jennifer Ashton says that's about to change.

The test is called pulse oximetry screening. And today, a special federal advisory committee is unveiling a new nationwide strategy to use this very effective method to screen newborns for congenital heart disease.

"I thought that I was going to have a normal baby. A normal, healthy baby," said Jodi Koravos, who had an uncomplicated pregnancy and a routine delivery.

At first everything seemed fine. And then, without warning, it wasn't.

"It's life changing. In that one instant, everything changed," Koravos adds.

Just a few hours after her baby, Alex, was born, a nurse told her, her baby was turning blue.

"There's no way to explain it. It's almost like nothing else matters in the world. But your baby has a problem in his heart and you need to take care of it," she said.

Alex's body was not getting enough oxygen. A simple and inexpensive test called pulse oximetry, or pulse ox, helped determine the cause - a congenital heart defect.

"I never heard of pulse ox before," Koravos points out. "I had never heard of congenital heart defects before and I truly didn't know that this was even a possibility."

But congenital heart defects are all too common -- 40,000 babies are born with them each year. From 1999-2006, congenital heart defects caused nearly 28,000 deaths.

"It's particularly important that we identify babies with these critical congenital heart defects, because if we don't they can go home from the nursery, and very rapidly die," explained Dr. Alex Kemper of the federal advisory panel.

No states currently require pulse oximetry screening of newborns, but at a hospital on Long Island that "The Early Show" visited, all babies are tested. A sensor is taped to the foot. The red light painlessly measures how much oxygen is in the blood.

According to Dr. Dennis Davidson, of the North Shore-LIJ Health System, "It's an easy test to do. The parameters for deciding what is normal or abnormal are clear cut. The oxygen saturation has to be greater than 95 percent at 24 hours of age."

As for baby, Alex, his oxygen level was only in the 50s. He needed emergency heart surgery.

"You see this body that's only being maintained by machines. He had tubes coming out of everywhere on his body," Koravos said.

Alex is now on the road to recovery. He has a big scar on his chest and will need two more surgeries. His mother checks his oxygen levels at home twice a day. As you can hear, he now gets plenty.

"If it weren't for pulse ox, Alex wouldn't have lived," a grateful Koravos said.

If this test is so easy and cheap, why aren't all hospitals doing it?

"Like a lot of things there are logistical factors," Ashton points out. "On the good side -- this is a cheap test, it costs about $1 per baby, it's a quick test in the hands of a skilled technician -- takes only 45 seconds.

"What you do if a hospital or baby gets a result needs to be worked out -- not every hospital has access to pediatric cardiologists, and the more specialized test needs to be done if the result is abnormal.

"The test can be a little less than perfect in darker skinned babies so Hispanic and African-American babies may have results less than ideal. So again, the logistics need to be worked out."

Are there other tests that can be done?

"Absolutely, prenatal ultrasounds usually done 20 weeks during pregnancy are accurate in detecting 75 percent of these congenital heart defects. When you combine that with a physical exam done in the nursery and pulse oximetry screening, 92 percent will be detected.

"That number is not 100 percent. It's important to remember some of the babies may not have symptoms in the first day of life, they can go home from the hospital and rapidly decompensate, get sick and die. So low-cost, high benefit test, I think, we'll be seeing a lot more of this."

Next week, New Jersey will become the first state in the nation to require that all babies be screened using pulse oximetry.

Upcoming Events 

 IMH National Family Conference

September 24 - 25, 2011

Visit our website for details and to register!   

Family Fun Day!

TAKE MY HEART TO THE BALLGAME

September 25th, 2011 at 1:05 p.m.

Minutemaid Park

Click HERE for more information

Please join us for an Astros game on Sunday, September 25, 2011 at 1:05 p.m. It's My Heart will be seated together in the Bullpen for what is sure to be a GREAT game!!  

IMH Webinar

National Keep the Beat 2011 Slideshow 

September CHD Birthdays

                                                         Haleigh Hinkle

                                                             8/11/2007 

 Dominick Perotti

9/4/2007

                                                   Aiden Patrick McClearn

                                                           9/10/2008 

Lindsey Marie Wolfgang

9/15/09 

Laura Lynne Logan

9/16/1998 

  Aedan Sears-Alvarado

9/8/10

Kari Jensen

9/23/80    

 Jasmine Seward

9/30/10

 John-Paul Tupaz

9/14/09

Family Matching

It's My Heart Chapters

Click here to find the IMH Chapter nearest you.

.