Arielle’s Journey with Hip Dysplasia

This post was hard for me to write. I had specifically planned not to share anything about Arielle’s hip dysplasia diagnosis and treatment on the blog or social media. But a few weeks ago after a particularly difficult day in Boston visiting her doctor, I got on Instagram to share my frustration and exhaustion, and I couldn’t believe how many kind, generous people reached out. Some wanted to know what hip dysplasia was, some shared their own experience with this common health issue, and many let us know that it was going to be okay. 

I know Arielle is going to be fine. And as far as issues go, this is very slight. But when you’re told that there is something different or “off” about your child, it can be emotional and upsetting. Now I’m sharing Arielle’s journey with hip dysplasia with the hopes that I can inform and ease the minds of other parents dealing with it. Because I know how much those messages of reassurance and support meant to me after a hard day.

During Pregnancy

Arielle’s journey actually started the month before she was born, when Dr. Shapiro told me that she was breech and we would have to do a scheduled c-section. There are five different contributing factors to hip dysplasia and Arielle has three of them. Firstly, she is a girl and girls are two to four times more likely to have the condition. She’s the firstborn and first-born babies fit tighter in the uterus, sometimes not giving them enough room to move around. And as I said before, she was a breech baby. 

But because we were dealing with first things first – the actual birthing part – the chance that she may have something slightly wrong with her hips due to this unfortunate positioning was not mentioned. And truthfully, I am so glad it wasn’t discussed because I already had enough on my mind. 

0 – 3 Months

The term, “hip dysplasia” was originally mentioned to us at one of Arielle’s first visits to the pediatrician. But when her doctor examined her, she said she didn’t hear the “telltale click” of this condition. We thought we were in the clear, but she suggested that Arielle have an ultrasound done on her hips as soon as she turned 3 months.

3 – 6 Months

Following doctor’s orders, Arielle had her hip ultrasound as soon as possible. She was so good when the technician held her out in the froggy position to get a good picture of what was going on. 

It was only a few days later when we got the call. Arielle had a very mild degree of hip dysplasia and the pediatrician scheduled a follow-up visit with a specialist at Tuft’s Children’s Hospital. Because it had seemed like such a long shot, I really hadn’t done any kind of investigating into what hip dysplasia was. But after finding out that this was now our reality, I immediately Googled it. 

“Hip Dysplasia means that the bones of the hip joint are not aligned properly. Hip Dysplasia prevents the hip joint from working properly and the joint wears out much faster than normal, much like a car’s tires will wear out faster when out of alignment. Hip Dysplasia also begins as a ‘silent’ condition so that pain is uncommon until later stages. This makes Hip Dysplasia harder to detect and more difficult to treat unless detected.”

– The International Hip Dysplasia Institute

I also discovered that 1 in 100 babies are treated for hip dysplasia. But even with those odds, I felt guilty, and still do sometimes. I felt like because I was on the smaller side (I’m 4’11” and had had trouble gaining weight for much of my pregnancy due to hyperemesis gravidarum), that it was my fault. I hadn’t given her enough room to move around and grow. But this isn’t about me. This is about Arielle. 

When we first visited with her specialist, he was hopeful that because her condition was so minor, that she wouldn’t need treatment. He said that with many of these slight cases the hip socket finishes growing outside the womb between 3 and 6 months. So we made another appointment for a follow-up ultrasound and visit in three months to see how she was progressing. 

6 – 12 Months

But when we returned, her hip socket had not improved and it was determined she would need treatment. Luckily, because her hip socket was only a few degrees off, she didn’t need a pavlik harness, which is often worn 23 hours a day. Instead, she was fitted for a hip abduction brace to be worn 12 hours every night. Again, this felt like a bit of a blow, but after seeing some of the wheelchairs out in the waiting room of the hospital, I realized that we were one of the lucky ones. Her doctor had assured us that while we would need to put in the hours in the brace, she would be able to walk normally. For many children that are seen at this hospital, that is not the case. 

We saw her doctor at 9 months for an x-ray, and then again at 12 months. Both times he said he was seeing progress, but she would need to continue with the brace. 

12 – almost 24 months

Arielle had started to stand on her own around 9 months, and by 12 months she had started to carefully walk around. At her 15 month check-up, we were told that for the first time since wearing the brace that she hadn’t made any progress. But, according to her doctor, that is normal when a child begins to walk. That initial stress on the joint can slow progress down to begin with, but he said that eventually, it would help the socket to solidify. We got the same news though at 18 months: no real progress, just keep wearing the brace at night. 

Then at her most recent visit, at 22 months, her x-ray showed that for the first time in several months her condition was improving. But her doctor said that she would still need to wear the brace. While it was great to hear we were finally getting somewhere again, as she gets more and more mobile it’s hard to put her in the brace for 12 full hours at night. To be completely honest, I hate seeing her in her brace as she tries to stand up in the morning. 

Going Forward

We have another appointment scheduled for August to check on her progress, but we know that even if she shows more progress, she’ll continue to have to wear the brace. This means we will have to keep her in her crib, instead of turning it into a toddler bed. We do have hope that she’ll be out of it before she turns three in May 2022. And her doctor has said that she is not a candidate for any kind of surgery. For that, we are very grateful. 

Resources

When we found out she had hip dysplasia, I buried myself in an internet search to find out more about her condition. I found this article from Boston Children’s Hospital to be very helpful, it’s also the source I used to write much of this post. The International Hip Dysplasia Institute has some great graphics on how birth positioning can contribute to the condition, as well as how the hip socket actually looks in someone with hip dysplasia. I’ve also linked to several other parts of their site above. 

Of course, our team, led by Dr. Braun at Tuft’s Children’s Hospital has been the greatest source of information and encouragement. And they are always so good with Arielle which has been a huge help on making the treks into Boston just a bit more tolerable. 

When all is said and done …

Arielle isn’t in pain. She has no trouble walking. One day she will graduate from her brace. And I cannot wait for that day! But until then we will be putting it on every night, and each night she’ll be one more step towards a fully-formed hip socket. 

We are so grateful that this is (so far) the only health issue we’ve had to deal with and we know how lucky we are. 

If you are dealing with hip dysplasia, or your child has been diagnosed, feel free to reach out to me. I’d love to chat and let you know that it’s going to be okay, just like the encouraging DMs I’ve received. 

I’ll keep you all updated with how she does going forward. 

P.S. I wore this outfit when I was a little one too. My mom had bought it in Germany in the 1980s. I’ll be sharing more about this shoot with Isabella Fagone Photography soon!