Rare and Complex Conditions

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

Reports of children who’ve contracted acute flaccid myelitis (AFM) have been in the news lately. Because of this, parents may be wondering what AFM is and how they can keep their family safe. While the condition is serious, the good › Continue Reading

Adults who were born with congenital heart disease (CHD) need to be followed by a cardiologist with specific training on the condition. Adults with CHD typically fall into two categories: those who have been seen all along, and those who › Continue Reading

October can be a scary time for many kids and families – and not for the obvious reasons like ghosts, goblins and ghastly things jumping out at you. Because my son is allergic to all nuts, for our family, the › Continue Reading

As more children with cancer are thriving into adulthood, they may now be ready to consider starting a family. Our Cancer Survivorship Center and Fertility Preservation Programs are poised to help cancer survivors navigate this process. There are many ways › Continue Reading

A dog is a girl’s best friend.  At least, Chevy was Katie’s best friend for a season.  Someone who showed up when life was at its worst.  When I had not seen her smile in weeks, Chevy brought her smile › Continue Reading

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

My 15-month-old daughter, McKenna, has my eyes, my hair, and smile. She also has the same deletion syndrome as I do: 22q11.2, or 22q for short. Also called DiGeorge syndrome, this condition is caused by the deletion of a piece › Continue Reading

My large intestine has never worked properly, so constipation has been a major issue in my life from the time I was a baby. I can’t empty my bowels naturally. When I was little, we used enemas to get the › Continue Reading

My son, Gavin, woke up one morning during Winter break 2015 looking like a chipmunk. His eyes were swollen shut. His lips were three times their normal size. Lymph nodes on his chin and neck were enlarged. He had lesions › Continue Reading

As a nurse practitioner in Cincinnati Children’s NICU, I meet parents on their happiest and most challenging of days. They’ve just welcomed a new baby into their family, but things aren’t going the way they’d hoped. It’s my job to › Continue Reading

Three years ago we received a call about a three-month-old boy, Sawyer, and his three-year-old brother, Gavin. We were told that there was something wrong with the baby’s liver and were asked if we were willing to take them. At › Continue Reading

When I was nine years old, my mom enrolled me in my first recreational dance class. She thought it would be a temporary hobby. One recreational class turned into nine years of competitive dancing, including countless out-of-town competitions and conventions. › Continue Reading

When my son Kelly was younger, he spent a lot of time with my sister and her family, especially in the summer months. He looked up to his Uncle Allen and cousins and always wanted to do what they did. › Continue Reading

It’s a question I am asked frequently as a colorectal surgeon. When parents first learn of their newborn’s anorectal malformation, or imperforate anus, they have many questions and concerns. Like all new parents, they want the very best start for › Continue Reading

My son, Tyler, has always been independent and confident. So much so, that our family joked that we could put him on a plane by himself to China at the age of four and he would have managed just fine. › Continue Reading

Cancer in everyone – from infants to the elderly – is complicated. However, cancer in adolescents and young adults (AYA) presents a particularly unique set of challenges. This group, defined as 15-39 year olds, accounts for about five percent of › Continue Reading

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