Rare and Complex Conditions

My oldest son, Austin, celebrates his 25th birthday in May. It’s quite a milestone, given that three years ago his heart stopped beating and he collapsed on a softball field. And that’s not even the beginning of his story. Austin’s › Continue Reading

If your child has an upcoming allergy skin prick test, you may be wondering what is involved. After all, you were informed that you could be in the allergy clinic for a couple of hours. So what exactly happens during › Continue Reading

It has been just about four years since my last blog post and I am thrilled to have the opportunity to provide an update on everything that has happened since then! How My Liver Transplant Journey Began My journey began › Continue Reading

Five years ago, I wrote about the amazing care our son Adam was receiving at Cincinnati Children’s for chronic myeloid leukemia (CML).  Fast forward to 2019, nearly four years after he graduated from college, he is living life to the › Continue Reading

Liver cancer happens when cancer cells develop in the tissue of the liver, forming solid tumors. The common form, hepatocellular carcinoma, is more common in adults than children. Hepatoblastoma, the common form for liver cancer in children, occurs in about › Continue Reading

My daughter, Kate, has Down syndrome. We found out hours after she was born, hours after we thought she was not going to survive, because she could not breathe on her own. Today she is thriving. She goes to an › Continue Reading

Two weeks a year, I have the great opportunity to go to summer camp as Co-Medical Director of NJoyitAll Camp. In those weeks, my patients are simply kids, and I am there to help them experience camp as authentically and › Continue Reading

For the first time in over 20 years, our home will become an empty nest, as the third of our three boys, Danny, heads to college. It’s hard to imagine what that will sound like – given today is such › Continue Reading

“What’s this rash,” I asked our local pediatrician in Oklahoma as he was finishing my son Jonathan’s two-month check-up. There were a few small, scaly bumps on his back that wouldn’t go away. It looked odd, but babies get rashes › Continue Reading

Dear Micheala, I have memories of us as little girls playing outside together, digging up dirt, jumping off the rope swing in the back yard and fighting over who was mom’s favorite. I never would have thought that one day › Continue Reading

Not many people get married four days after a proposal. But for me, being married was the one thing I thought would comfort me as I headed into a high-risk heart surgery. So, I proposed. Born with Tetralogy of Fallot › Continue Reading

Heart health is important for adults AND kids alike. The habits that we establish as young children, such as lifestyle choices and the way we eat, are carried with us into adulthood. In fact, there is some research to suggest › Continue Reading

A lot’s happened since I last wrote about our family’s experience with eosinophilic esophagitis (EoE), Life with EoE Times Three, on Cincinnati Children’s blog! I’d like to give an update on my 7-year-old daughter, Tinleigh, because she’s living the allergy › Continue Reading

Many parents are overwhelmed with excitement when they discover they’re expecting a baby.  Additional emotions may arise, however, when they learn that their baby has a birth defect. Understandably, confusion, blame, sadness and worry are among the most prominent feelings. › Continue Reading

It wasn’t until my mid-twenties that I discovered that I had three major health conditions. And to say that it took a long and painful road to get there is quite an understatement. The road involved two years of pain, › Continue Reading

I recently returned from a week-long test of my physical abilities and mental fortitude – an entirely voluntary, week-long bike ride through the mountains along the Blue Ridge Parkway to raise money for hemophagocytic lymphohistiocytosis (HLH) research. This particular bike › Continue Reading

Since he was an infant, few things have brought 5-year-old Ephraim Lober more joy than music. He attended his first baby music class at just 6 weeks old and was totally enthralled. He quickly became the poster child for music therapy › Continue Reading

I’ve always admired my daughter’s determination.  Whatever Attie is doing, she gives 110%. This passion spills over into her dance performances, academics, and even her battle with pancreatitis. So I shouldn’t be surprised that she is dancing the lead in › Continue Reading

Receiving a diagnosis of twin-twin transfusion syndrome (TTTS) can be overwhelming. The mother faces the possibility of fetal surgery and modified bed rest afterward. Her unborn babies’ lives are typically in serious danger. At this time, families usually are experiencing › Continue Reading

You don’t have to avoid vacationing 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

Having a child diagnosed with a chronic illness is anxiety provoking for any family. This is especially true when a child is diagnosed with epilepsy, which is an unpredictable and potentially life-threatening disease. While most children do well and stop › Continue Reading

Preparing Thanksgiving dinner can be stressful under the best of circumstances! But when you have a guest with food allergies, menu planning can be even more of a challenge. Read on for a few recipes and tips for hosting a › Continue Reading

If you’re pregnant or thinking about becoming pregnant, you’re probably aware of 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 › Continue Reading

I always knew my son, Ethan, would need surgery. It’s pretty common for kids with cerebral palsy to need orthopedic surgery at some point in their lives. He has mild to moderate cerebral palsy and we tried to avoid surgery › Continue Reading

As an adult with Type 1 Diabetes (T1D) and mother of three children—one of whom also has T1D—I have learned that this chronic illness can easily present mental and emotional challenges. My experience, however, has also taught me that parents › Continue Reading