Jalen has been a miracle since the beginning. We struggled with infertility and experienced four miscarriages over five years before he came into our lives. Each pregnancy took nearly a year to achieve, and each time, we lost the baby. During my pregnancy with Jalen, I was constantly terrified of miscarrying and prayed every day for his safe arrival.
We had a C-Section scheduled for November 1, 2013, because Jalen was in a breech position. The moment I saw him and heard his cry, I felt an immense relief. He was finally here, safe and sound, and I could breathe again.
That relief lasted for about a minute before I felt the fear creep back in again. I watched his newborn examination, I remember noticing they didn’t bring him over to me as quickly as I expected. The providers were focusing on his legs, and more and more of them entered the room with concerned looks.
After what seemed like forever our nurse brought our little boy over to us and explained that they identified what looked like “severe bilateral hip dysplasia” during his examination. She gave us basic details on the diagnosis (all of which seemed extremely scary to new parents who haven’t ever heard of this diagnosis before). A few hours later, our physician confirmed the diagnosis and explained that it was quite severe, affecting both hips. She outlined the potential journey ahead but couldn’t answer our questions about the long-term prognosis. We were told to follow up with a pediatric orthopedic doctor for a thorough examination and more detailed information.
When you’re pregnant, you develop all these dreams for your future life with this child. We spent hours upon hours talking about what his future might look like and who he might become one day in life. Mark (Jalen’s dad) has been an athlete all his life and we’d talk about how awesome it would be for him to one day coach Jalen’s sports teams. It’s funny how you can envision a whole future for your child before they even come into the world.
It’s hard to put into words the feelings we experienced when we were told there was something wrong with Jalen’s legs. It was as if our hearts literally sank into our stomachs. We were overwhelmed with sorrow and uncertainty about the challenges he might face. I remember feeling so much guilt because we had come up with all these pre-conceived dreams for him. It’s like we had set him up to fail with these expectations, because now they might not even be a reality, and how unfair and selfish that was of us as parents.
We followed up with our pediatrician after returning home from the hospital, who gave us a list of pediatric orthopedic specialists we could follow up with. After doing a lot of research we had no doubt that we wanted the best of the best and that was Nemours Children’s Hospital, Delaware. Luckily, Nemours was able to get Jalen in very quickly to be seen (within a week of his delivery) but all the what ifs and unknowns made it feel like a lifetime. Despite the long commute from our home in Lancaster, Pennsylvania, we knew it was worth it to ensure Jalen received the best care.
I cannot say enough good things about Nemours. We walked in for the first time, and it was such a bright, colorful and fun atmosphere. Kids were everywhere, with toys and fun things for them to do and play with in every corner of the building. There was such a relief when I stepped into the hospital because you could see that children, and making children happy, was a priority in that building. This was like no other hospital experience I’ve ever had.
Every employee we met was so upbeat, kind and friendly. They made sure to acknowledge and be playful with Jalen. Dr. Mihir Thacker, in particular, was absolutely amazing. We went into that room full of uncertainty and walked out feeling confident that he was going to do everything he could to help our son. I felt like we were a priority and his sole focus each time we were there with him. He encouraged us to ask questions and to bring up any fears we were struggling with so he could help answer those questions, and we weren’t going home with any what ifs. I remember us bringing up the question as to whether Jalen would live out a physically “normal” life one day and feeling so guilty at admitting we were grieving a future we had envisioned for our child. Dr. Thacker was so sincere and nonjudgemental with how he answered us and never made us feel guilty.
With Dr. Thacker, we never once felt rushed. He took his time and built a rapport with Jalen. Even once we reached the point of going a year or more in between checkups, Dr. Thacker always remembered who we were and the specific details of Jalen’s case. My favorite memory about Nemours and Dr. Thacker was during our final brace visit (the visit where Jalen was released from needing his brace any longer). Dr. Thacker walked into the room with a smile and said “Well, I can’t promise he’ll be a professional athlete one day, that’ll be up to him. But his hips have healed and look great. He’s going to be able to live a life of playing lots of sports if that’s what he wants to do one day.” For him to come in saying that shows how much he cares about his patients. He remembers them because they’re actually important to him. I don’t know if Dr. Thacker will ever really know how much he meant to us. He not only healed our son’s hips, but he gave Jalen his future. He made it possible for Jalen to pursue whatever dreams he has for himself in life. We think about him and all he’s done for our family often, especially as we watch our son become an amazing elite athlete.
Now 11 years old, Jalen continues to have imaging checkups every few years, but for the most part continued care is minimal because of his success with Nemours during infancy. It’s been a continued trend that whenever we take Jalen in for a checkup, the doctor will bring in a bunch of interns and explain his diagnosis and treatment/recovery journey and let the interns help with Jalen’s assessment. They review the imaging together so they can learn more about what this treatment journey looks like and see the success Jalen’s had! We are watching him live out this beautiful life becoming an elite athlete. This most recent year, Jalen has tried out and made it onto multiple competitive travel sports teams.
Our plans for the future are simple: to support Jalen in every dream he has for himself. We will continue with regular checkups but ultimately, because of Nemours’ help early on in his life, he is just enjoying and living his best life and we get to sit back and watch it all unfold! If I could give any advice to another parent on this journey, it would be to give yourself grace. It’s okay to be caught off guard and be scared of the unknown. If there is one thing I’ve learned through all of this, it’s that sometimes the unexpected circumstances can be a beautiful blessing. One day in the future you are going to be watching your child living out their dreams and you get to appreciate these moments on a much deeper level because of the journey it took to get there. When you face a journey like this and come out on the other side it makes their success that much more beautiful.
