Tag "congenital heart defects"

My 15-month-old daughter, McKenna, has my eyes, my hair, and smile. She also has the same deletion syndrome as I do: 22q11.2, or 22q for short. Also called DiGeorge syndrome, this condition is caused by the deletion of a piece › Continue Reading

Dear Heart Donor Family: That name seems so cold considering the role you now play in our lives. You saved our son’s life. We’ve thought about you a thousand times. We’ve wondered how you are coping. We know you miss › Continue Reading

Twenty years ago my son was born with a heart condition called tetralogy of Fallot. When I found out I was shocked and had a million questions fluttering through my mind. Gabe has a congenital heart defect? Something is wrong › Continue Reading

Our son, Henry, is a patient in the Heart Institute. He has tetralogy of Fallot and had open heart surgery on November 17, 2015. He had this procedure when he was five months old to correct some of the defects caused by his condition. We have pursued › Continue Reading

Music means different things to different people. That’s the beauty of it. As a professional guitarist, it’s always been a part of my life. More recently, it helped me through some difficult moments. It also brings people together. I’m always › Continue Reading

Our identical twin daughters, Selah and Shylah, celebrate their second birthday today. And while this is an exciting milestone for any parent, it feels particularly victorious for us because our girls were born conjoined by the lower third of their chests to the navel, and shared › Continue Reading

I was born in Dayton, Ohio in 1971 with transposition of the great arteries (TGA). This means my pulmonary artery and aorta were in reverse position, preventing oxygen rich blood from pumping into the body. TGA babies had a blue tint › Continue Reading

This quote is appropriately displayed on our participants’ bib holders, which they will be able to frame after they finish the progressive Flying Pig Marathon: “The miracle isn’t that I finished. The miracle is that I had the courage to › Continue Reading

Henry arrived after an easy pregnancy and smooth delivery. Soon after his birth one of his nurses casually mentioned that she heard a heart murmur. I convinced myself it was just a benign murmur, something that would fix itself or › Continue Reading

Today – March 6 – is a special day for us. It is our son Ryan’s birthday (see Part 1 of our story here). We’re excited to share the final part of this story today because it turns out this › Continue Reading

When our son Ryan was born with a congenital heart defect (CHD), the world as our family knew it was turned upside down. If you didn’t read that part of our story yesterday, please go read it here and then › Continue Reading

Our son Ryan has always been a heart warrior – that’s part of the deal when you’re diagnosed with a congenital heart defect (CHD) as a baby. But he and our family didn’t truly become heart advocates until a fateful visit › Continue Reading

Cincinnati Children’s recently received a $32.5 million federal grant to study congenital heart defects. The grant from the National Institutes of Health will make Cincinnati Children’s the coordinating center for the Bench to Bassinet Program for cardiovascular research. “Children’s will › Continue Reading

One of the most common threads we hear from parents is the challenge of understanding and describing your child’s congenital heart disease to friends and family. That’s why we developed nine congenital heart disease animations for families to view and share. But › Continue Reading

Below, you will find eight videos that were created in 2015 that you should’t miss. These stories did not find their way onto our blog or other social media channels in the last year, so we wanted to be sure to give › Continue Reading

Jodie Walter was born with hypoplastic left heart syndrome and was a patient of Tom Kimball, MD, at Cincinnati Children’s for her entire childhood. Kimball doesn’t treat Jodie anymore, but she still inspires him. “To see Jodie grow from this › Continue Reading

This summer Asia went through driver’s ed class. One day the students watched a video on organ donation. I had spoken with the instructor earlier in the week about Asia’s heart transplant because she had been at a doctor’s appointment. › Continue Reading

Last Summer I had the honor of being an older camper and camp counselor at Camp Joyful Hearts, a residential summer camp for kids and teens that have heart disease. It’s such an amazing camp and experience for these kids › Continue Reading

Congratulations to members of the graduating Class of 2015! Our care teams have had the pleasure of getting to know these incredible young people over the years while they have been patients at Cincinnati Children’s. On top of their dedication and hard work in › Continue Reading

The next big thing in imaging was recently used to help prepare our team for a rare and complex heart procedure. Over the last year, Cincinnati Children’s Heart Institute has been creating patient-specific 3-dimensional (3D) complex congenital heart disease models › Continue Reading

A couple of weekends ago, our family attended the 3rd annual Heart Institute Family Education Day at Cincinnati Children’s. We heard amazing speakers as we focused on the long term outcomes of children born with congenital heart defects (CHD). Our keynote › Continue Reading

One of the best ways I’ve found to help people understand congenital heart disease is by visual illustration or drawings. In fact, my love for drawing is what led me to the field of pediatric cardiology. As many of my clinical mentors have › Continue Reading

If you’re a parent of a child with a congenital heart defect (CHD), explaining your child’s condition to your friends and family members can be challenging. That’s why our Heart Institute created nine animated videos to help illustrate the defects. › Continue Reading

Like many of you, I’m looking forward to watching the XXII Olympic Winter Games in Sochi. I am particularly excited to watch Shaun White compete against the world’s other elite snowboarders in the halfpipe competition next week. Although it is › Continue Reading

This month we are sharing reader-submitted stories that reveal the true spirit of the holiday season. This is Hannah’s story as told by her mom, Libby. Every day when I look into the eyes of my happy, healthy six-year-old daughter Hannah, I › Continue Reading