Lauren Parr became an advocate for hip dysphasia when her daughter Tori was diagnosed with the condition at birth. After caring for Tori through time in a Pavlik harness and taco brace and seeing the significant improvement these treatments had on her daughter, Lauren approached the IHDI eager to tell her story and help other new parents through a similar journey.
Lauren recently answered the following questions to help bring awareness to hip dysplasia in infants and the importance of early treatment. Like many new parent’s, Lauren and her husband knew very little about hip dysplasia and what it meant for Tori, so they turned to the IHDI website. Now, they are sharing their story with others looking for that same help.
- How did you feel when you first learned Tori had hip dysplasia?
I felt terrified and very overwhelmed. Tori is our only child and we were alerted right at birth that she had a hip click. My husband and I were so excited to meet our new baby that in that moment we did not think too much of it. It was not until they took her the next day for a sonogram that the diagnosis was confirmed. In the following hours, we researched a bit more about the condition and were alarmed to see that she might need to have surgery. We were definitely not prepared to get that kind of news on day two of being new parents. I felt my already fragile infant was even more fragile. Was I hurting her hips when I held her? Would she have to have many surgeries in the future to fix this? It was definitely a lot for us to take in.
- Were you aware of what hip dysplasia was and how it is found and treated in infants?
I faintly recall my OB/GYN mentioning in passing that breech babies could have hip issues. Honestly, now knowing that she was very high risk, being a first born female in breech presentation, I wish I had prepared myself and my family better. We certainly did not know how dysplasia was treated and that was a large source of stress for us. Her prognosis just seemed so up in the air. We were told that we would try braces and see how that worked. If not, we would proceed to surgery, however, sometimes that may not be effective the first time either. Being told you have to wait and see is not the answer you want to hear for your child.
- How did you become familiar with the Pavlik harness and what life was going to be like for Tori while she had to wear it?
A hospital tech came to our room with her Pavlik harness shortly after she came back from her hip sonogram. No one had told us the results of the exam. We found out Tori had hip dysplasia when he came to put her in her brace. So, at this point we also did not know the severity of her dysplasia. The tech very quickly put it on her and handed us the written instructions. He had put the brace on without a onesie underneath, which we later learned could cause her some discomfort from the straps, and told us to follow up with our Orthopedic Surgeon on how to use it. He wasn’t sure if we could take it off and on or how to maneuver daily activities such as diaper changes and baths. It was a big blow to say the least, and a lot to take in to see our brand new baby in a full body harness with little idea of what was going on.
- What is the #1 message you would give to other parents experiencing the same situation you did?
Everything is going to be okay! It truly was harder on us as new parents than it was on our little one. I am so thankful that she went through all of this at a very early age and now has healthy hips. I did not want to hear any of that when this was happening. My expectations of a perfectly healthy little baby came crashing down the day Tori was put in a Pavlik harness and I was devastated to not be able to dress her up in all of her new outfits or even give her a bath. But she is just fine now and will have no memory of wearing the braces or the frequent follow-up visits to check her progress. It was much tougher on us as her caregivers than it ever was on her and for that I am so grateful. Regardless of the path your journey takes you, your little one will make it through this too and will be learning to crawl and walk with healthy hips before you know it!
- What tools did you use to educate yourself about hip dysplasia, good products to use and ways to care for a baby with hip dysplasia?
I had googled a lot in the beginning which got me a mix of information from various blogs. I finally decided only to refer to the IHDI website for continuity in care information and am happy with that decision. The site has all of the information we needed and more. It was a lifesaver. Tori had reflux so we had to learn early on how to keep her harness clean. We would put high socks on legs to keep the bottom part of the harness clean during diaper changes. We also used some of her next sized onesies to put on over her harness so that when she would reflux the harness was more protected and we could change her a bit easier. Even with taking every precaution, the harness would still get dirty. To clean the harness, we would dilute Dreft with water and scrub it with a tooth brush while Tori was wearing it since we were not allowed to take it off for baths or laundering. After some trial and error at bath time, we learned the best way to “bathe” her was to put a changing pad by the sink layered with towels and sponge her off. We would cup her head over the sink to wash her hair. The only difference really was that we were not able to run water over her body and we did not get to see her precious feet until we were done with her Pavlik harness and into the hip abduction brace at month two.