Camille's Hip Dysplasia ~ Life with a Pavlik Harness

This is not my typical post. No recipe or home design tips today. Just one momma's heartfelt experience with her newborn's diagnosis of hip dysplasia. Feel free to skip this post if it's not helpful to you. My hope is, that someone else out there just got this diagnosis and it will be helpful to them! If you follow me on Instagram of Facebook, you may be aware that our baby girl Camille was diagnosed with DDH - developmental dysplasia of the hips, when she was 2 days old.  I thought I would share some of what we went through now that her harness wearing days are officially behind us!

When Camille was two days old we went in for her first well baby check. Since our insurance is different than our older kids insurance we went to a pediatrician that we were not familiar with. We would have 30 days to add Camille to our other plan, but for the time being Camille would be covered under our plan. The new doctor was very nice, and she noticed that Camille's hip was making a click sound. I didn't really understand what she was talking about, but she referred us to a specialist that was going to explain things to us. When I called the specialist I was told they don't treat patients that are this young and we were then referred to Shriner's Children's Hospital. Since it wasn't an emergent case we had to wait almost 6 weeks for an appointment. Since I wasn't thinking this was a big deal, she wasn't in pain or discomfort of any kind that I noticed, I didn't think much of it. My main concern at the time was trying to get her to gain weight, as she had gone down to 5 lbs after being born 6lbs 3oz. Plus, we were adjusting to life with a newborn and juggling having 3 kids now...
It just didn't worry me much.

On the Friday we went in for her first orthopedic appointment I was floored when the doctor said both of her hips were completely dislocated and she would need extensive treatment to fix them.  She was immediately placed in a Pavlik Harness. I was so unprepared, I didn't even have a onesie with me in the diaper bag! And for some reason the PA who fitted the harness on Camille made me feel terrible about that. How could I not have a onesie? What did I think was there for today? It was awful.  I cried the entire way home from the hospital.

Camille right after being fitted, in her borrowed onesie.

It was February, it was cold, my baby couldn't wear pants, footie pajamas, nothing but a onesie. I could not take her out of the harness. Ever. At. All. for the first 3 weeks. Ever. At All. Even to bathe/change diapers. Not. At. All. Queue the ugly cry.

But we made it. We got through it. And if you are in the same boat, I'm here to tell you, you will too! My friend made Camille some pants with snaps down the side that went over the harness. My other other friend ordered her leg warmers to go under the straps of the harness.

The first month was the hardest. Then, after we switched insurance, we met her new doctor who gave us permission to remove the harness for 15 minutes a day so she could have a quick bath. I was so excited! Another month went by and she had another ultrasound. Things were improving, but we weren't able to go harness free yet. We began a weaning schedule. An hour of freedom twice a day for a month, then two hours twice a day for a few weeks, then finally, just naps and night time until last week. And finally we are harness free!

Yesterday Camille had her hips x-rayed. The doctor said that her hips are in the sockets, but the sockets are still not formed perfectly.  For now he wants to wait and see how they develop. When she is 4 they will do another x-ray and then decide if surgery is necessary. While it is not the "your baby is cured" I had hoped for, I am still relieved that we are done with the harness.

I did learn a few things that I wanted to share with anyone who just found themselves in this boat.

First, it's okay to be sad and to cry. One of the most frustrating things when she was first diagnosed was people telling me "At least she won't remember it." You will remember it! And it's not fun. You have the right to feel upset.

Leg warmers are so helpful! We didn't really need them once it got hot, but when the weather was cold, they really protected her skin and kept her warm.

Keep a onesie under the harness so the straps don't rub. If your baby spits up a lot try putting a bigger onesie over the top of the harness to protect the straps from getting spit up on.

Have fun with hair accessories. I was so sad that Camille couldn't wear any of the cute outfits I had bought her and that we were just stuck with onesies. So, I bought a lot of headbands and they are so much fun! (Girls tip!)

Breastfeeding is tricky. I had to have Camille sitting straight up on my lap straddling my side to nurse. She refused to nurse on the right breast and that was so frustrating. Give yourself grace here. If breastfeeding isn't working for you or her, it's okay! Bottle feeding is not bad!! I did a combo of both because she wanted to breastfeed, but I really think it would have been easier not to. Your choice and don't feel guilty if you can't or don't want to. You have enough going on with this harness!

Try to find a friend who has gone through this! You don't have to be alone! I looked on Instagram and connected with a couple moms who were going though the same thing, and have since been contacted by several others. A support system is so helpful!

This is just a season, but it when you are in it it seems to last a long time. I know! So take breaks when you can. And remember that you are helping your child so they will walk correctly. They will get stronger and hopefully not need surgery. Keep that in mind. This will sometimes seem awful and your baby may cry, but you are strong enough to get through this!

xoxo