Rare and Complex Conditions

In the middle of May 2014, out of nowhere, my son, Will, had a seizure. Little did we know that it wouldn’t be his last, nor how much our lives were about to change.  Soon after, our pediatrician sent us › Continue Reading

Recently, I joined some colleagues from Denmark and the US to publish a study. It found a higher risk of dementia in adults who were born with congenital heart disease (CHD). In particular, we discovered a significantly higher risk for › 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

I was born with pulmonary atresia with ventricular septal defect and multiple aortopulmonary collateral arteries. To put it simple, I was born with a hole in the bottom half of my heart, no pulmonary valve, and lots of tiny arteries › Continue Reading

Now’s the time when families start considering and booking vacations for the summer. But for the parents of children with special needs, thinking about a vacation takes a whole other level of consideration and forethought. Many families want to go › Continue Reading

To My Dearest Miracle, Zak: December 29, 2017 we will celebrate your first birthday. The past year has been a tumultuous journey—one I can hardly explain in words. DIAGNOSED WITH AN ENCEPHALOCELE IN SECOND TRIMESTER From the fifth month of pregnancy, › Continue Reading

There was a time when children with cystic fibrosis weren’t expected to live past elementary school. Now, for the first time, there are more adults living with cystic fibrosis than children. Cystic fibrosis is a genetic condition that affects the › Continue Reading

Holiday 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 colleagues in our allergy clinic and the Cincinnati Center for Eosinophilic Disorders to › Continue Reading

We had never heard of pulmonary hypertension until December 2014. Now we know that it happens when the blood flow that leaves the right side of the heart faces an increased resistance, increasing pressure on that side of the heart.  › 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

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