American Heart Association Heart Walk luncheon

Today, me, Chris and Britta were guests at the local chapter of the American Heart Associations luncheon. They asked me to be a guest speaker, which I was thrilled (albeit nervous as heck) to do!


Here's the text of the speech that I gave...

Before I get started, I just want to take a moment to thank the American Heart Association for inviting me to share our story here today. This is such an important cause to myself, my husband Chris and our family, as we very nearly lost our youngest daughter Britta earlier this year.

About 36,000 babies are born each year with congenital heart defects. That’s at least 9 out of every 1,000 babies born.

Our youngest daughter, Britta was one of them. Britta was born just shy of 37 weeks last December. She was our fourth child, and when they told us she was healthy enough to go home despite some feeding issues, we didn’t question it. At least not immediately. After a week and a half at home, her health began to decline. She refused to eat, and even though she wasn’t taking anything in, she was projectile vomiting constantly. I took her to the doctor several times, I took her to the ER. Each time I was sent home with her, and told that “babies spit up.” But I knew that there was something more to it.

On January 2, 2012, after being sent home from the ER the night before, I took Britta, who was just over two weeks old by then, to her regular pediatrician. By the time we got to his office that morning, Britta was ashy colored, lethargic and critically dehydrated. Her doctor told me to bring her straight to the hospital. That he thought that she had a G.I. condition called Pyloric Stenosis that would require surgery.

At that news, my husband and I were shocked. We had three other perfectly healthy children. And there’s something comforting in that, you know? Something that you take for granted. That all of your kids will be healthy, too.

After they admitted her, it quickly became apparent that this was far more than a GI issue. She went bradycardic several times. She went into respiratory distress. We watched every bit of color drain from her. And it was obvious to everyone that she was fighting to stay alive. Thankfully, a nurse that was working with Britta said, “I’ve called in Doctors Gugle and Kattash. They are cardiologists. We don’t expect to find anything wrong with her heart, but I just want to double check.” While we watched Doctor Gugle do the ECHO on Britta, the look on her face told us that they DID in fact find something wrong. Something that they didn’t expect being that she was almost 3 weeks old. It wasn’t common for a baby to be able to survive with the type of defect that Britta had for that long. She had been at home those weeks fighting hard.

Within hours of our arrival at the hospital that afternoon, Britta had coded multiple times. She was in total heart failure. There was no reason to believe that she would be okay. According to the doctors that diagnosed her, she was one of the sickest babies they had ever seen.

We are so incredibly lucky that we have well trained, pediatric cardiologists here locally that, once they saw Britta and took a look at her heart, they were able to quickly diagnose her defect, despite its rareness, and then make arrangements to have her transported to world class surgeons that night.

Britta was diagnosed with Total Anomalous Pulmonary Venous Return. A rare defect that basically means that all of the veins that bring oxygenated blood from her lungs, were never connected to her heart. So, there was a backup of blood in her lungs, the right side of her heart was incredibly overworked and enlarged, and her body was left oxygen deprived. She was critically ill, and was flown to New Orleans as soon as they were able to stabilize her enough for the flight and would have emergency surgery. The surgery would be delicate. Risky. Especially taking into account how ill she was. But it was the only chance she had to survive.

The cardiac team of surgeons and nurses at Children’s Hospital in New Orleans was the best display of medical care I have ever seen, and could ever imagine. They repaired Britta’s tiny heart and within five weeks, she was out of the Cardiac ICU and back at home with Chris and I and her brothers Liam and Finn and sister Hailey.

The research that the American Heart Association funds is vital to saving the lives of children with Total Anomalous Pulmonary Venous Return and other congenital heart defects. The work they do is so immeasurably important. From testifying before congress about the need for federal dollars to fight heart disease, to public education through their website and from functions like the Heart Walk that  raise money, awareness and hope.

During the past year, they have spent almost 8 million dollars on research related to heart disease in children. Many awards fund research projects aimed at determining how the heart develops before birth and how congenital heart defects develop. Research that will help babies and children like Britta survive every single day.

One of the most thrilling moments in life is when your child is born, and hearing the doctors and nurses tell you that they are perfect. Ten fingers. Ten toes.

One of the most hopeful, is when they send you home with your newborn. There’s that feeling of unlimited possibility.

One of the most terrifying is when you take your child to a healthcare provider and your instincts tell you that they are sick, but the doctors have no idea what’s wrong.

One of the most horrific, is watching your babies lungs stop pumping. Their heart stop beating. Right in front of you.

One of the most humbling is thanking the person who somehow saved your child’s life. To shake the hand that literally repaired your baby’s broken heart.

One of the most gratifying is standing before you today to share Britta’s story. And how hard she fought. And hoping that it will inspire you to take care of your own heart and educate those that you love.

There was no reason to think that tiny Britta would be okay. That we would ever take her home again to be with her brothers and sister.

But she was. And we did.

And every family deserves an ending like ours.

And with the research and work the American Heart Association does, more and more children will survive and get that happy ending.

Thank you so much!