Rare and Complex Conditions

It took about 24 hours for the previous day’s events to truly sink into my seven-year-old son’s mind. I think the excitement – the pinch-yourself-is-this-really-happening kind of awe – was too much for him to believe in the moment. But › Continue Reading

I will never forget the day.  It was in February 2010. I was driving home after picking up my kids from school.  My phone rang and it was the call I had been anxiously awaiting. The doctor was calling with › Continue Reading

Today is “Rare Disease Day.” “’Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their › Continue Reading

Making decisions about college can be overwhelming for anyone. But if you have a chronic illness like Crohn's disease or ulcerative colitis, it can be particularly stressful. To help you prepare, our inflammatory bowel disease (IBD) team put together this › Continue Reading

Learning that your child needs proton therapy can be overwhelming. On top of mentally processing a child’s cancer diagnosis or new course of medical treatment, the logistics can be a lot to manage. The time commitment can vary but often › Continue Reading

In May of 2003, I was given a diagnosis that would change my life forever. One day I woke up a healthy and active 16-year-old girl, finishing my junior year of high school, preparing for a 10-day summer trip to › Continue Reading

As a child living with a congenital heart defect (CHD), I knew that I was different. I went to the doctor a lot more often than my friends did. I had scars all over my chest and back. My parents › Continue Reading

You don’t have to avoid traveling just because your child has Crohn’s or ulcerative colitis.  To help families prepare, our IBD team put this checklist together to help families when traveling abroad or here in the US. Maintaining your child’s › Continue Reading

Holiday menu planning can be challenging for anyone, but for friends and family members of kids with food allergies, it can be especially difficult.  So I reached out to my fellow dietitians in our allergy clinic to compile some allergy-friendly › Continue Reading

It never occurred to me that I wouldn’t be able to hold my daughter right after her birth. She was born nearly three months too early – and it was a whirlwind, emergent situation bringing a premature baby into the world. › Continue Reading

There is nothing worse than watching your child go through something excruciating and being unable to stop it. Sarhea’s Birth Story On a Tuesday morning, my daughter Sarhea (Suh-ray-uh) was born via emergency cesarean section due to her not responding during › Continue Reading

If you’re pregnant or thinking about becoming pregnant, you’ve probably heard how common premature birth is.  Every year in the United States, 380,000 babies are born prematurely, or when a baby is born before 37 weeks of gestation. This is › Continue Reading

I would like to start by saying congratulations! Preparing for a newborn baby is an exciting time in any parent’s life. Receiving the news that your baby has a cleft lip/palate can be overwhelming, but preparation up front can be helpful › Continue Reading

Lately our patients have been asking us more questions about supplemental or alternative IBD diets related to the management of the disease. Because of this uptick, I thought it might be helpful for families to read about the role alternative IBD › Continue Reading

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