Disclaimer: I am not a medical professional. This post and all my blog posts are my experiences and opinions only.
As we were going through the diagnosis process with my son, many Google searches brought back results about Selective Dorsal Rhizotomy (SDR) surgery. The more I saw it, the more I started to research it. Deciding to have surgery for your young child, who cannot advocate for themselves or even understand what surgery is, is a very difficult decision to make. However, as we continued on our journey, it became clear to my husband and me that Selective Dorsal Rhizotomy (SDR) surgery was the right next step for our son and our family.
In this blog post, I will detail our journey with Selective Dorsal Rhizotomy (SDR) surgery in hopes of helping other families who might be considering it or have a surgery date approaching. This post will focus on the pre-surgery journey.
I would also like to give a shoutout to the website SDR Changes Lives. It was a great resource for us during this process.
Where To Have the Surgery
If you start searching for information about Selective Dorsal Rhizotomy (SDR) surgery online, you’ll likely come across Dr. Park at St. Louis Children’s Hospital. While he didn’t invent the surgery, he has certainly revolutionized it. After researching Dr. Park and his team, we knew that if our son was a candidate for SDR and we could manage it, we would strongly consider traveling out of state to see him.
However, we were also fortunate to discover that a neurosurgeon at our local children’s hospital also performs SDR surgery. Since having the procedure done locally would be more convenient for our family, we decided to meet with this neurosurgeon as well. We wanted as many expert opinions as possible!
To begin the process with Dr. Park’s team, we filled out an online “Patient Intake Form“. After submitting the form, we received communication from his office outlining the next steps. If approved, we had the option to do a virtual or in-person evaluation. To save on travel expenses, we chose to do the virtual evaluation, which involved submitting our son’s medical records and videos of him moving around (with the guidance of our physical therapist). After submitting everything, we waited 6-8 weeks to hear back.
While waiting for a response from Dr. Park’s team, we met with the neurosurgeon at our local children’s hospital. Since our son receives most of his care there, the appointment was quick and straightforward. The neurosurgeon agreed that our son was a good candidate, but he doesn’t operate on children under the age of 3. He advised us to reach out once our son turned 3 years old and they would help us make all the necessary arrangements. It was reassuring to have one option confirmed, and we appreciated the clarity provided by our local hospital’s neurosurgeon.
A few weeks later, we received the news we had been eagerly awaiting: Seth had been approved for the surgery by Dr. Park’s office. It was a moment that took our breath away, and made everything feel incredibly real. We had always known that if we could afford the best for our son, we would do it without hesitation. This was not a criticism of our local children’s hospital, but rather a reflection of our unwavering commitment to our son’s well-being.
To our surprise, on the same day we received approval from Dr. Park’s office, we also received a call to schedule the surgery. It was a bit overwhelming, but having a set date allowed us to start planning and preparing for the next step in our journey.
The planning process was fairly straightforward. We made the decision that my husband would stay at home with our daughter to maintain her normal routine. Then we asked my mom to accompany Seth and me to St. Louis, and we were very grateful that she agreed. Knowing that I had that support during such a stressful time was a huge relief.
Hotel: We stayed at the hotel attached to the hospital. My mom and I would be swapping sleeping in the hospital with Seth, therefore we’d be walking back and forth alone, we thought an indoor walk would be the best option for us.
Packing: Here are our packing lists (minus the usual travel stuff).
- Comfy clothing
- Travel Coffee Cup & Waterbottle
- Single-Serve Coffee Maker & Pods (for hospital room)
- Tote Bag (to tote things back and forth between the hotel & hospital)
- Comfy clothing
- Toys & Comfort Items
- Sippy Cup (easier to drink in hospital bed)
- Bibb (to save messes when eating laying down)
- White Noise Machine
- Medical Stroller (or stroller with supportive footrest)
- Snacks (for everyone)
- Drinks (for everyone)
- Charging Cables
- Battery Backup
- Tablet & Clamp Tablet Holder (for hospital bed)
- Firestick TV (for hospital TV)
That brings us to our departure for St. Louis! For Part 2 in this Series, please click HERE.
“Of all the words of mice and men, the saddest are, “it might have been”.”Kurt Vonnegut