This is the Heart Journey of Benjamin Winger, as told by his mother, Leah. 

After a long, uncomplicated pregnancy that did not even include bed rest, Benjamin "Ben" Jeffrey and Abigail "Abbie" Grace were born via c-section. Abbie was immediately sent to the NICU for 4 days due to breathing issues but Ben stayed with us the whole time. Within weeks of being home, we noticed that Ben was projectile vomiting at least one bottle a day and not gaining weight as quickly as his twin sister. We took him to the doctor at 2 weeks old and almost 4 weeks old. The diagnosis was a sensitivity to the formula and/or the stomach flu. We changed his formula to rice cereal formula as we were told to do and the vomiting decreased. At 6 1/2 weeks old the vomiting returned with a vengeance. After a few days we decided to take him to urgent care (this was Saturday 6/12/2010). The doctor noticed some grunting, which we thought was just what Ben did. We were sent to do blood work and some x-rays.

The labs quickly come back with what the doctor thought was pnuemonia, so she put us in the "holding room". An ambulance was called to transport us to a hospital 30 minutes away. While waiting for the ambulance Ben's breathing became very labored so they called 911 to get him out of there as quickly as possible. Finally the ambulance arrived, and I was loaded in a sitting position on the gurney holding Ben. On the way out the door it was decided that Ben should go to a closer hospital (one that did not specialize in medicine for children) just to stabilize him. Being wheeled out, I glanced around and saw 2 ambulances and a fire truck all there for my little baby. I leaned down and whispered, "Look at all the chaos you are causing little guy. We will have stories to tell you later." I still didn't realize how serious this was until the lights and sirens flipped on as we sped down the streets.

Once in the hospital the doctors immediately worked on stabilizing Ben, as well as ordering more labs and x-rays. We held onto Ben for about an hour or so until they decided he would be better in a warmer. They sent down a warmer from their labor and delivery (that was about the only thing they had for babies). After being there for about 2 hours, the Children's Hospital transport team came in and took us over to to the main hospital. They knocked him out, inserted a breathing tube, and loaded him into the rescue squad. My husband and I headed over on the freeway and quickly found the rescue squad, which we followed. The whole way there I analyzed every movement I could see through the windows and rationalized that if there were no lights and sirens he was doing okay.

More labs, another x-ray, an EKG, and an echocardio gram were all ordered upon arrival at 6:30pm. Ben's oxygen kept decreasing and increasing during all of these tests. Finally at 1:00 am the cardiologist came from home to perform the echocardiogram. Here they found his diagnosis.... Supracardiac TAPVR. This meant immediate surgery to close a hole in his heart, cut off an extra vein, and open a chamber that is not supposed to be there.

We are now 7 months post surgery and Ben is doing fantastic!  His oxygen levels are always near 100% and is the happiest little guy!  I still cannot help but think of how close we came to losing him that day. At his birth he was 6lbs 13oz and at admittance he was 8 pounds even.  If there had been more testing when he was born, or if the doctors would have listened a little more closely, maybe he would not have had emergency open heart surgery. I am thankful everyday that I still have his smile and laugh!

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

Doctor: Heart defect may be source of migraines

By Christi Myers

From KTRK, ABC in Houston

March 23, 2011 

HOUSTON (KTRK) --Life is often a painful blur for migraine sufferers. These often debilitating headaches affect more than 29 million Americans, and treating them is often hit and miss. But a Houston teen's battle with migraines led to a startling discovery that uncovered a serious health problem she never knew she had.

Samantha Duncan is a talented and gifted singer. But this High School for the Performing and Visual Arts grad had a painful secret. "I started getting migraines when I was about 10 or 11 and then I started having fainting spells when I was about 12," she said. Her migraines often forced her to miss school because the pain was so unbearable. "It was horrible, absolutely horrible," Duncan said. She spent years seeing specialists and taking a variety of medicines. "It didn't get rid of the migraines. Only time would," Duncan said.

She found the source of her problem when her mother took her to see Dr. Mohammed Numan at UT Health Children's Memorial Hospital. "When he heard about her history of migraines, he said, 'We oughta check you. You may have a heart defect,'" said Paula Vadervoort, Duncan's mother. "I see about three to four patients per week with the same complaints," Dr. Numan said. Duncan had a defect that causes holes in the heart called atrial septal defect. Dr. Numan scheduled her for surgery, but before he did, he asked her mother one important question. "He turned to me and said, 'Do you have migraines? And I said, 'I have crippling migraines that I've had since I was 12,'" Vandervoort said. It turned out she had the same problem. Mom and daughter had their heart surgeries about two months apart. The procedure was minimally invasive and both returned quickly to their routines. But did it work?

"I was having headaches every day, migraines several times a month and now, I'm pretty much headache, pain, migraine-free. It's amazing," Duncan said. "I haven't had a migraine since," Vandervoort said. "But no one had ever mentioned that it was possible that a heart defect could be causing it." But she's thankful because the discovery changed two lives. Dr. Numan says about 70 percent of his patients have seen their migraines end because of the surgery. About 10 percent don't see any improvement at all, but he's convinced that it works.

To see the video accompanying this story, click

here

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CHD in the Media 

Australian Researchers Say the Search must Widen for Genes that Cause Heart Defects in Babies

From News-Medical.Net

March 29, 2011  

Australian scientists have discovered a new group of genes that could be responsible for causing heart defects in children, which affect more than 2,000 babies born each year in Australia.

Researchers at Sydney's Victor Chang Cardiac Research Institute, have found that as well as genes that are active in the heart as it forms, genes not directly involved in the development of the heart may also cause a congenital heart defect.

Their findings are reported this month in the prestigious international journal, Human Molecular Genetics.

It is estimated up to 20 per cent of heart defects are linked to gene abnormalities, but for the remaining 80 per cent, the cause is largely unknown[i].

"Up until now, scientists around the world have identified gene abnormalities, or mutations, in a number of cases of congenital heart disease (CHD), by looking at those genes that are active in the heart as it's developing - the logical place one would search," said Associate Professor

Sally Dunwoodie, Head of the Embryology Laboratory at the Victor Chang Cardiac Research Institute in Sydney.

"What our research shows, is that we now must widen that search, to include genes that are active outside the heart as it forms, elsewhere in the embryo, because they may also impact on the heart's formation," continued Associate Professor Dunwoodie.

Using a mouse model, the researchers reveal that a gene called Cited2 is active in the heart during development, but its activity there plays no role in normal heart formation. Rather, it is its earlier activity in embryonic tissue, before the primitive heart develops, that can affect the subsequent formation of the heart and result in defects at birth.

In Australia, heart disease is the leading cause of childhood death, accounting for 30 per cent of deaths in children under five.

Heart disease in children can range from a relatively simple hole in the heart, to a highly complex range of conditions that can either cause the developing baby to die in the womb, or can severely affect the heart's rhythm and blood flow.

Associate Professor Dunwoodie says this research could help identify a far greater range of causes for CHD, underpinning better treatment for patients and improving genetic counselling for families.

"Cures for heart disease in children are rare.  A number of surgical techniques are available to improve quality of life for kids with heart disease, but in many cases this involves massive and repeated surgery on tiny babies. So early intervention and genetic testing to see if family members are likely to have a baby with a heart defect, are where the real differences are going to be made."  

To read more, click here.

Keep the Beat It's My Heart

1st Annual Lake Dallas High School

CHD Awareness Walk

Lake Dallas High School, Corinth, Texas

Saturday, April 2, 2011

Keep the Beat It's My Heart

1st Annual Boston

CHD Awareness Walk

Endicott Park, Danvers, MA

Saturday, July 3, 2011

2nd Annual Greater Seattle Chapter

CHD Awareness Walk

Warren G. Magnuson Park, Seattle, Washington

Saturday, July 23, 2011 

 IMH National Family Conference

September 24 - 25, 2011

More details coming soon. Stay tuned!

CHD Birthdays

We're celebrating birthdays from March and April this month due to technical difficulties in last month's newsletter. Happy Birthday to all! 

                                     Joshua Steinberg                         Kynlee Gooden                     Victoria Oransky 

        March 1, 2008                            March 5, 2004                        March 5, 2010

          Emma Dunn                            Emma Gaebel                        Kathy Ware 

       March 10, 2003                         March 12, 2009                    March 19, 1974

Family Matching

It's My Heart Chapters

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