Rare and Complex Conditions

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

We adopted Shana from China when she was seven. She had lived in an orphanage for special needs children her whole life. It was pretty obvious that she had never learned to run and play. She did not laugh. They › Continue Reading

Kawasaki disease is one of those conditions that many people haven’t heard of, until one of their loved ones is affected. While it is rare, it is important to be aware of because it can be easily misdiagnosed as other › Continue Reading

I was diagnosed with congenital hip dysplasia immediately after birth. My clicky hips were treated with the 1980s version of the Pavlik harness, triple cloth diapers.  As a child, I was a masterful toe-walker and contortionist that enjoyed w-sitting, doing › Continue Reading

I am a sentimental human.  Every so often, I’ll pull out these photo albums that my mom lovingly put together for me growing up.  They start with a baby girl with big brown eyes exploring her new world. Eventually, she › Continue Reading

Have you ever wondered how it is possible that you can solve problems around the house, achieve goals at work, or finish a challenging task? This is due to something called executive function (EF). EF is a group of thinking › 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 a toddler and thriving. She › Continue Reading

Early in my medical training, I developed an appreciation for the positive impact of pediatric palliative care on the lives of families and patients.  Palliative care is an approach to medical care that focuses on improving the patient’s quality of › Continue Reading

We’ve all read about the rare stories in the news where a teen collapses on a court or field from sudden cardiac arrest (SCA). As parents, they shake us to our very core. For cardiologists like me, they haunt us. › Continue Reading

Recently the FDA approved a cancer treatment for kids and young adults that has been successful in clinical trials. It’s called CAR T-cell therapy, or chimeric antigen receptor T-cell therapy. I like to call it the Pac-Man for acute lymphocytic › Continue Reading

As a social worker in the Cincinnati Fetal Center, I help families process and move through a serious diagnosis that they have received for their baby. Receiving news that your child is sick is heartbreaking. Families often feel like they’ve › Continue Reading

It is that time of year when high school juniors are starting to think about college visits and life after high school. The college search can be stressful, and having an eosinophilic gastrointestinal disorder (EGID) can add an extra layer › Continue Reading

When a child first receives a cancer diagnosis, the news impacts the entire family. Everyone processes this differently, but typical reactions can include fear, shock, disbelief, guilt, confusion, anger, and sadness. Our team in the Patient and Family Wellness Center › Continue Reading

My son, Quinn, was born with the most severe form of Hirschsprung disease. He has come far in his three years of age – in fact, he’s able to go eight hours without any of his three assistive nutrition modalities. This › Continue Reading

The Centers for Disease Control states that 6.2 million children currently have asthma. Of those, it is estimated that anywhere from 5-20% of them have severe, complex and/or difficult-to-treat asthma. We define difficult-to-treat asthma by the symptoms patients are experiencing. › Continue Reading

Today we’d like to raise awareness for a lesser known eosinophilic condition, eosinophilic gastritis (EG), one of a handful of eosinophilic gastrointestinal disorders (EGIDs). When families receive a diagnosis for any one of these EGIDs, it can be overwhelming for › Continue Reading

Dining out can be a relaxing, enjoyable experience. However, parents of children with celiac disease may have a different perspective. Some families may not attempt to eat out at all, while others may do it but find it incredibly stressful. › Continue Reading

Celiac disease is a tricky condition. It can take many years to get a diagnosis because it is often missed or mistaken for other conditions. The symptoms are quite vague and some people have no symptoms at all! The Celiac › Continue Reading

I was diagnosed with Crohn’s disease at the age of 15, but I didn’t let that stop me from chasing my dreams of playing collegiate soccer. After diagnosis, I continued to participate in sports and other physical activities just like › Continue Reading

What do all three of these people have in common? Former U.S. President Dwight D. Eisenhower American pop singer Anastacia Los Angeles Lakers forward Larry Nance, Jr. The surprising link between the three people listed above is that they all › Continue Reading

I’ve always known my daughter, Campbell, was one of a kind.  She had a full head of the most beautiful hair, big blue eyes, and a strong will from the moment she was born.  As soon as she entered the › Continue Reading

Before Mia’s Cleft Surgery We didn’t know she would have a cleft lip. When they put my daughter on my chest after birth, the first thing I saw was the triangular space that separated one side of her lip from the › Continue Reading

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