As an infant, I had gross motor delays. I did not sit up until I was a year old or walk until I was two years. I was placed in a developmental preschool in my township in Maple Shade, New Jersey. When I was four years old, the physical therapist through that program felt that I needed a hip X-ray, as she thought I might have hip dysplasia. It was recommended that I be taken to Dr. Bowen at Nemours Children’s Hospital in Wilmington, Delaware. Dr. Bowen diagnosed me with Bilateral Congenital Hip Dysplasia.
Because my Hip Dysplasia diagnosis was caught so much later in life (normally diagnosed in infancy), I had to have multiple surgeries, when I was around four and eight years old, to reconstruct my hip sockets. I was in a body cast after each set of surgeries. Later, when I was 14 years old, I developed knee pain; Dr. Bowen referred me to Dr. Gabos, who diagnosed me with a torn meniscus. Once again, I had to undergo surgery, and thankfully, I was back to normal within a few weeks.
As difficult as my surgeries were, my experience at Nemours will always hold a very special place in my heart. The kindness and warmth that I was treated with still stays with me to this day. My mom always tells me a story about how one of my pediatric nurses said to her that she felt for me while I was having one of my surgeries because she overheard “Zoobilee Zoo”— a show I used to watch. When it came on the TV, it reminded her of me, and she expressed concern about my surgeries. Dr. Bowen, my main doctor, was always so patient and kind during every single one of my visits. I spent many years traveling down to Nemours in Delaware for follow-ups, and we were always treated wonderfully at each visit, from the registration desk to the nurses, the doctors, and even the cafeteria workers. Those connections made all the difference.
My son Nathaniel, who is now eight, ended up on his own medical journey at Nemours. When I had my 20-week ultrasound, we were told something no parent wants to hear, “there is a problem with the baby,” and they shared that Nate would be born missing his left hand. We knew this would be a hurdle that we would be able to overcome. Then, at just two and a half weeks old, Nate started having fevers and other symptoms that resulted in him being hospitalized. He later developed severe asthma and, separately from that, very severe vomiting episodes that would last days at a time. This sent us on a long journey to try and find a diagnosis. We were very lost for a long time.
When Nate was four years old, we found our way to Physician Assistant Jennifer Ness at Nemours Children’s Health in Cherry Hill, New Jersey. Jennifer immediately began working to find a diagnosis for Nate. We spent a summer down at Nemours Children’s Hospital, Delaware, doing multiple tests. She finally helped us receive the diagnosis of Autoinflammatory Disease (uSAID). Nate was also diagnosed with abdominal migraines.
To say our experience with Jennifer was life-changing is an understatement. She gave me my son back. He is now a healthy 8-year-old who plays soccer and lacrosse, swims, and most of all, runs up and down the street with his friends, just enjoying life. He is thriving, and I don’t know where we would be without her. And again, when I had to bring Nate down to Nemours Children’s Hospital in Delaware for testing, I had the same warm experience that I felt as a child. I knew my son was in the best hands. I would even bring him down to Delaware for pediatric blood work because nowhere near me was able to do the bloodwork with Nate. He would end up leaving screaming and crying, whereas at Nemours Children’s, they seemed to have the miracle touch. He would barely wince when they drew his blood.
It has been a long journey, but I am forever grateful for the amazing experience at Nemours, not only for myself but for my son. Every time I see my son running with his friends, I am so grateful to see this new chapter for him. As for me, I went on to have a relatively normal life after recovering from my surgeries. I played sports until I was 15, but unfortunately, I had to give that up due to my hips. I had a hip replacement when I was 35, but that was to be expected given my history. Since my hip replacement, I have been able to work out 3-4 times a week, doing HIIT workouts, which is wonderful for me. My son and I take long walks with our dog as well.
The advice I would give to someone going through something similar is that when you have a medically complex child, as I did, it may seem like a long road, but keep working to find the right doctors who listen to you and push to find answers for you. My mom did that for me, and I know I was able to do that for my son, thanks to Nemours Children’s.
