Developmental Dysplasia of the Hips- DDH for short.

Ok ok, I’ve got to come clean. I didn’t just start this blog to talk about handling home life as a mother. My daughter has hip dysplasia and I need to vent. I’ve heard many people say, “I thought only dogs could get hip dysplasia.” And while I’m infuriated by the fact that someone just compared my child to a dog, I am thinking something much worse: “I thought only other people’s children could have serious medical issues. Not mine? Not us?” So I’ll go ahead and start from the beginning.

On day 3 after delivery, we were undergoing all of our release tests and procedures. Stella passed her first test ever (a hearing test) and I could not have been more proud. I felt as though she deserved a gold star to go on her paper. Next was clearance from the pediatrician. The doctor came in, listened to her heart, looked in her ears, you know, the usual stuff. Very much so in a rush, he told us that our baby was perfectly healthy and was out the door. Seconds later he returned. “I just have to check one thing, actually.” He unwrapped Stella from her swaddle and started moving her thighs in a circular motion. He did this for a few minutes. I remember thinking “What is he doing? I have never seen this done before? What does he think is wrong with my baby?” When he finished the seemingly strange examination he told us that he felt a “click” in her right hip, a “clunk” in the left and that it is very likely she has hip dysplasia. He left the room again and brought back a photo of the harness he said she would have to wear. I remember looking at the photo and being horrified. It was the scariest looking thing I had ever seen in that moment. Strangely enough with everything going on, that paper went into a folder with the 50 other papers we received during our stay and the thought of Stella having hip dysplasia sort of faded…picture1

… Until the first visit with her actual pediatrician, Mr. Joe. He did the same examination as the doctor in the hospital; moving her thighs in a circular motion. Mr. Joe was clearly more concerned about Stella’s hip than the previous doctor. We learned that hip dysplasia affects 1 in every 1,000 babies and is most commonly found in first born females who were delivered in the breech position. Check, check, and check. He ordered a visit with an orthopedic doctor along with an ultrasound of her hips. He stressed how important it was for us to get this handled ASAP. Ok, now I was starting to worry. I naturally consulted my family at this point on the issue (we are very close). Turns out, both of my nephews and my niece were all ordered to see an orthopedist and to have an ultrasound done of their hips. All three resulted in a negative for hip dysplasia. I remember vividly my brother-in-law saying, “We had to do the same thing. Trust me; it’s probably nothing.” In my mind, there are no better parents than my sisters and their husbands so I did- I did trust him. Nonetheless, we made the appointments and again, hip dysplasia slipped my mind for a while.

2We saw Dr. Lee, our Ortho, first. We just love him. He has the best qualities in a doctor (in my opinion). Sensitive to our feelings on the matter but honest about his medical opinion. During our first visit, Dr. Lee did not feel the clicking that the other doctors did. What a relief. He said we should still have the ultrasound done for safe measures and that we did. After a few weeks, Stella was finally big enough to have her ultrasound done. She behaved so well while having her hips looked at. My typical little angel. I could tell that something was not right though. The ultrasound tech was taking a very long time. She eventually had to have someone else come in to help. If you have ever had an ultrasound done, you know that the techs won’t tell you what they see as they are not doctors and are therefore not allowed to give you any diagnosing information- erg. When the two techs finished, they left the room to go consult with the radiologist about the images. One quickly returned with the news that Stella tested positive for hip dysplasia in both hips. “She will just have to wear this adorable little harness,” the tech said. My heart dropped. I knew exactly what harness she was talking about- the scary contraption the pediatrician in the hospital showed me. About an hour later, I got a call from Dr. Lee. He had seen the images of Stella’s hips and confirmed that he needed to see her the next business day to fit her for the Pavlik Harness. Typically, we try to keep negative energy away from our baby. Rob and I do not bicker or fight around her and we even fake laugh constantly to make the world as she knows it as happy as possible. It’s super creepy to watch but we don’t really care. That night, I held Stella in my arms and cried harder than I have ever cried in my life. Naturally, she thought I was performing another one of my exaggerated fake laughs. She looked up at me and gave me one of her big, gummy grins. Geesh I love this girl.

img_1950So in the Pavlik she went. She was ordered to wear it for 24 hours a day 7 days a week. She hated it. I hated it. We all hated it. Snuggling wasn’t the same, diaper changes took 10 minutes, and she could no longer hang in her beloved Boppy pillow. Dr. Lee estimated that she would have to wear the harness for 6-8 weeks and then she would be cured! It sounds so minimal to me at this point. 6-8 weeks in a harness? That’s only 2 months?! At the time I couldn’t think of anything worse. It felt like it was the end of my world. I cried every day. Everyone’s words of encouragement to me were like nails on a chalkboard (they still are, to be honest). “It could be so much worse.” To me, in that moment, this was the worst. No one could possibly understand what we were going through. I know, a little mellow dramatic but hey, my baby was sick and I was postpartum. The entire earth may as well have been on fire.

Week after week Stella was showing no improvement in her ultrasound photos. Those darn hips just didn’t want to budge. After 4 weeks of no improvement, we joined a club called “Pavlik Failure.” I obviously was not happy about our new membership. Dr. Lee then fit Stella for a new brace (our current brace) called the Rhino hoping for better results. Compared to the velcro Pavlik, the Rhino is a much more rigid brace with hard plastic which holds her hips firmly in place. Again, she hated it. I hated it. We all hated it. She doesn’t fit in anything.  We had to borrow a special car seat from the hospital for safe traveling. While making the arrangements, all of the nurses and doctors kept referring to it as a “special needs” car seat. Those words still make me sick to my stomach. It is so hard to wrap my mind around the idea that my daughter has special img_2176needs. Being the amazing husband he is, Rob was able to comfort me in coming up with a new term for her stupid, bright blue car seat. It is now her “high maintenance seat”. Because, you know, she’s a princess and all. The Rhino isn’t all bad though compared to the Pavlik. She can now have baths and it comes off for diaper changes. My favorite part of the day is when I get to hold her little bare body against mine while laying her nighty down to put her inside.

After 4 weeks in the Rhino, Stella still has no real improvement. Our next step is a Spica cast. Oh, the nightmares I have had about the dreaded Spica cast. It is a hard, plaster cast that will be worn for 12 weeks. She will be put under anesthesia and the doctor will inject a dye into her hips. Under a low-grade x-ray, they will physically maneuver her hips into the sockets. If they cannot get her hips into the sockets manually, they will make small incisions in her groin area and snip her tight tendons (called a tendon release) that could be the root of the problem. While this is the scariest news we have gotten during our hip journey thus far, we are taking it the best emotionally. Having my 3-month old baby put under anesthesia scares the s%^# out of me but at least we have an endpoint. This will definitely work. In 3 months she can begin to learn how to sit up, roll over, crawl- all the things a normal, healthy baby has the pleasure to indulge in. In 3 months, our hip journey will not be over. She will likely have to wear the Rhino brace for a few weeks longer full time, then just at night time as we wean out of it. She will have follow-up appointments for the next few years to make sure everything is growing the way it should be. But in 3 months, we can breathe and know that our little girl is better. She will FINALLY have the healthy hips she deserves.

By the time this is all over and done with, we will be the strongest family out there (yes, stronger than then Incredibles). I look forward to the day that Stella comes to me as a teen and says, “This is the worst day of my life” when her little twerp boyfriend breaks her heart. I will reply, “Honey, trust me, you have seen a day much worse. You just don’t remember.”

2 thoughts on “Developmental Dysplasia of the Hips- DDH for short.

  1. Hello,
    Your post has been a big comfort to me. We just came home from the hospital with our 5 day old baby girl and, lucky us, they also sent us home in a Pavlic Harness, which I hate just as much as you did. The day the ortho fitted her for the hardness, while I was still recovering from my c-section, because, you guessed it, she was breech, was such an emotional day. I sobbed the whole time they were fitting her and barely heard a word the doctor was saying. We go back for an ultrasound tomorrow and I’m praying for good news!

    Liked by 1 person

    1. Hi Hanna,
      I am so sorry to hear about your family’s recent diagnosis. I sure understand the heartbreak in seeing your precious babe in that darn contraption. Good news is that the Pavlik is highly effective! I’m sure the ultrasound will bring you a bit of comfort. Good luck on your journey and feel free to reach out if you need any advice Xx

      Like

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