We are excited to welcome Spica Life to the IHDI Advocate Spotlight page. Parents Kyle and Bridget were gracious enough to share their story and tell us why they decided to get involved in the fight against Hip Dysplasia.
- “Tell us a little bit about yourself”
We are Kyle and Bridget, and our children are Grayson, age three, and Londyn, age one. We currently reside near Milwaukee, WI but have lived many places thanks to Kyle’s service in the United States Marine Corps. Kyle is currently serving in the Marine Corps Reserve and working at a manufacturing plant while Bridget, a Registered Nurse, stays home with the kids.
- “What was your first experience with hip dysplasia?”
We were unknowingly introduced to hip dysplasia the day our daughter Londyn was born. In her newborn assessment at the hospital, the pediatrician flippantly mentioned that she felt a hip click. However, we had no idea what a hip click meant or that it could indicate something as serious as hip dysplasia. Brushing it off as a common newborn trait that goes away within a few weeks, the pediatrician told us not to worry, but just to make sure we bring it up at our daughter’s next appointment.
- “Take us through hip dysplasia journey”
At our daughter’s next few appointments, we weren’t told anything relating to her hips and it was documented that they thought her hip click had gone away. At Londyn’s four-month well child check, we saw a different doctor in the practice. Sure enough, while examining her hips, the new pediatrician felt a significant hip click and sent us straight for an ultrasound and an appointment with an orthopedic surgeon.
We had absolutely no idea what to expect. The only information we were given by the pediatrician who found her hip click was, “It’s not a big deal, she’ll just have to wear this special harness for six weeks and she’ll be fine. But it’s a really big deal because if it’s not treated right away she could need a hip replacement at age two.” We were completely confused, and scared. We went home and tried to do some research before her orthopedic appointment the following week, but given the wide variety of DDH outlooks, it was impossible to research what the future might hold for Londyn specifically.
Thankfully, when we finally arrived at our pediatric orthopedic surgeon’s office, our questions were answered. Yes, Londyn had hip dysplasia. We learned that her left hip was dislocated and her right hip was not measuring at the right angle. We then began our journey battling DDH. First, Londyn was to complete six weeks in a Pavlik harness, beginning immediately. We had arrived to the appointment not knowing what, if anything, was wrong with Londyn and we left with her in a Pavlik harness, which seemed like a medieval torture device to a mama’s heart!
Londyn wrestled with the harness but eventually accepted it, and even began to sleep at night. We made it through the six weeks, and then began slowly weaning her off of it, per our orthopedic surgeon’s instructions. At the time of discontinuation of the harness, we were told “Londyn’s hips have normalized!” The Pavlik harness was successful! Our orthopedic surgeon gave us four weeks to go home and treat Londyn like a normal baby and we’d check her hips in a month to make sure they had stayed on track. We were overjoyed and hoped this was the end of her hip issues.
At the end of our month of freedom, we were devastated to find that Londyn’s follow up X-ray revealed her hips were again dysplastic. The next step was a closed reduction and a minimum of twelve weeks in the spica cast. We cried, we processed, and then we planned and prepared. We found a small, supportive DDH community online which helped us obtain a spica chair and gave some other wonderful product recommendations. We scoured the internet for hope, for answers to what life would feel like and what it would look like with our baby in a spica cast. The few blogs we found were godsends to ease our hearts and minds, but we still felt like there wasn’t a one-stop source for information, specifically on babies in spica casts. This realization would later lead to our decision to create our website, Spica Life.
Bridget decided to record our hip dysplasia journey week by week on her blog, goldenfrenzy.com, to update our long-distance family and friends on Londyn’s progress, and to hopefully encourage other spica parents looking for a hint that life is going to be okay, even if your worst fear has happened and your baby will need surgery and a spica cast.
We made it through Londyn’s first closed reduction on a thousand prayers, and she was handed back to us in a bright pink spica cast. And so began the discoveries of how to care for a baby in a cast of this size. We learned through trial and error over the next 18 weeks! (Unfortunately, at her 12 week arthrogram, our orthopedic surgeon felt she would need another 6 weeks in the cast.) In July 2016, Londyn’s cast was removed, and we were finally able to squeeze her again! The cast seems to have done its job admirably, and Londyn gets stronger every day as she is slowly gaining confidence to use her legs. As we continue through the coming series of follow up visits and X-rays, we will see where our hip dysplasia journey leads.
- “Please tell us a about a few highs and lows you’ve experienced along the way”
Highs of our Journey:
– Working with our orthopedic surgeon and Children’s Hospital of Wisconsin. The doctor has been our hero throughout our journey. His calming voice, incredible knowledge, and sensitivity to our needs as parents settled our emotions and fears since the first time we interacted with him. We joke that Londyn developed a crush on him, and he spends time every visit just smiling at her and talking to her, as well as engaging our son in conversation about GI Joes or Superman. He even pulled some strings to get Londyn a purple glitter cast at her second cast change. His dedication to his job and care for our daughter has been fantastic, and we are grateful to have him and his staff to guide us through this journey.
– Getting the cast off at week 18! It was an amazingly new, yet familiar feeling to hold our cast-free baby again. Tears filled both of our eyes as we watched Londyn stare down at her legs, gingerly feeling the dry skin on her thighs before reaching down and grabbing her toes for the first time in 18 weeks.
– Celebrating Londyn’s first birthday. Having a party despite the fact that Londyn was in a cast was so much fun. We took her spica chair to a park and celebrated with our family and friends. Londyn had a blast seeing everyone and being wheeled around in her chair.
Lows of our Journey:
– Complications after Londyn’s first cast change. Londyn experienced complications with her airway, as a result of the anesthesia and full intubation. The anesthesiologist had to come to our recovery room to prescribe additional IV medication achieve a normal airway. This was a very scary time for us.
– Constipation struggles. Throughout our journey, Londyn has had serious constipation issues as a result of being in the cast.
– Finding out the Pavlik Harness did not work. After the good news from her post-pavlik X-ray, we were shocked when Londyn’s next visit showed her hip dysplasia had recurred. We were speechless when the doctor began talking about a spica cast, as we were expecting the visit would bring good news.
- “How did you come up with the spicalife.com website? What does the site do?
Spica Life began with a desire to make how-to videos for topics like bathing and changing diapers in a spica cast. Eventually we decided to just try making one video, then another, and another. The process of creating the videos and thinking about how to present them online gave us the vision for a site containing not only the videos, but all kinds of other information and connections to other resources out there.
The goal of Spica Life is to provide parents just beginning their spica journey with all the information they need to quickly adjust to life with a spica baby, and connect them with other online communities and resources that could answer any ongoing questions they have.
A long term goal of Spica Life is to create a searchable archive of encouragement and experience from veteran spica parents. We have a standard questionnaire for parents to fill out and share their story/advice. These stories are then featured on our site and social media. We are off to a great start with submissions, but there are thousands of Spica Veterans out there! Anyone who has spica experience and is willing to share it with those looking for advice and encouragement can go to www.spicalife.com/share and fill out our form.
- “Whats on the horizon for spicalife.com?”
Our vision for Spica Life is that every time a parent is told for the first time their baby will be going in a spica cast, they will also be pointed to Spica Life in that same conversation. Every time a parent preparing for a spica journey goes to Google and types in “spica cast”, our website is at the top of page one for them as a resource. We want to continue evolving Spica Life to make it as effective as possible, and connecting with as many other resources out there as we can to make that happen. We want to use Spica Life as a vehicle to become more involved in this community, and partner with other organizations to take action to raise awareness and eduction about DDH with parents, families, and caregivers.