Rare and Complex Conditions

My daughter Emma is a bright, funny and loving three-year-old girl. She’s also observant, quiet, and slightly reserved. And she has Trisomy 21 (Down syndrome), complete tracheal rings and laryngeal cleft. She’s taught me many lessons in her short life, › Continue Reading

You’ve just been told by your doctor that your baby has spina bifida. Between the tears you’re fighting back and the questions running through your mind, you’re probably scratching your head in confusion about all of this “spina-something” business. Spina › 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

This is a tale that I never imagined I would be telling. A tale that involves both of my children being diagnosed with restrictive cardiomyopathy, and both needing heart transplants within three years of each other. Katie’s Tale It all › Continue Reading

In the summer of 2011, my husband and I sat in an emergency room at Cincinnati Children’s and felt the floor fall out from under us. We knew something was wrong with our son Brodie, but we never expected to › Continue Reading

Cardiomyopathy is a heart disease that can be life threatening, especially if you don’t know you have it. Some people have no symptoms of the disease. Others have symptoms but aren’t aware that they need to act on them. You › Continue Reading

As I prepare to ride a bike for 700 miles over the next seven days—for the third year in a row—I am both nervous and excited. Nervous because I know the ride is challenging. Excited because I am passionate about › Continue Reading

Now that the school year is in full swing, parents may be feeling the need for lunch-packing inspiration! With food allergies on everyone’s minds, many schools are going “nut-free.” If your child is nut-allergic or not nut-allergic but attending a › Continue Reading

When people describe what seizures look like, they often assume that they only look one way – when a person falls to the ground, jerks, and is unconscious. Some seizures certainly do look like that, but not all seizures have › Continue Reading

Here I am, taking in my first month of college at the University of Cincinnati and all I can say is wow, what a journey it has been getting here. Everyone my age has a story of how they got › Continue Reading

When you’re the parent of an infant, there’s a lot to think about and consider – especially when it comes to safety. There are practices for safe sleeping, car seat riding, bathing, diapering, and the list goes on and on. › Continue Reading

To say that my 13-year-old daughter, Allison, is an active kid would be an understatement. She plays year-round sports – volleyball, basketball, and track – as well as participates in 4-H events, like showing 1,300-pound cows and contesting with her › Continue Reading

Proton therapy is a game changer for cancer treatment in kids and young adults. I’ve spent my entire career working with great teams of people who put their blood, sweat and tears into finding the best outcomes for kids with cancer. › Continue Reading

When I first met Dr. Garcia at age 13, I was known as “torpedo chest” at the community pool because of the large dent in the center of my torso, and still a long way away from considering my now › Continue Reading

If you knew a family member or friend had a potentially dangerous or catastrophic health issue but wasn’t seeing a doctor for it, would you recommend that they see one? I think the vast majority of us would. In my › Continue Reading

There’s a very real health issue happening right now – well, it’s been going on for the last 3-4 decades – and we haven’t been able to break through the “noise” to spread awareness for it. I need your help. › Continue Reading

At the beginning of 2016, I was miserable. My family was on vacation in Colorado so that we could ski, something we’ve been doing since I was little. The second day we were skiing I fell and landed on my › Continue Reading
Summer is an exciting time for kids and families alike, as the days are filled with camps, sleep-overs and vacations. During this time, parents of children with food allergies have the extra challenge of figuring out how to navigate their child’s › Continue Reading

When your child receives a diagnosis of IBD, or inflammatory bowel disease, it can be earth shattering in many ways. It’s a frustrating condition to manage and can impact your child’s and family’s quality of life. While medications to treat IBD › Continue Reading

In short, hematuria in kids – or blood in the urine – often means that something else is going on in their bodies. It tells us that we need to do further exploration. Rarely is hematuria in children caused by cancer, › Continue Reading

If you have had a child born with a heart defect, you may be concerned that future pregnancies will result in a similar outcome. Congenital heart defects (CHD) are common and impact more than 40,000 babies each year. The chance of › Continue Reading

Anna Joy is the youngest of four incredible little girls. My pregnancy with her was going smoothly — I was super sick with “all day sickness” just like I was with her older sisters. Nothing seemed amiss. At the routine 20-week › Continue Reading

I’ve been asked several times why the butterfly is such a meaningful symbol, not just for me and my fiancé Ty, but for the entire transplant population. And put quite simply, it’s important because a butterfly symbolizes hope. Before it › Continue Reading

Starting infants on solid foods not only provides nutrition, but also gives them a valuable opportunity to learn about different tastes, odors, and textures — which is an important milestone for all babies, regardless of whether or not there is a › 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