Where to begin.
June is Hip Dysplasia awareness month, so I thought it would be appropriate to provide an overdue update to where we are in this journey, and also bring awareness once again to what hip dysplasia is, something dear to my heart. I also realize it's the end of the month here but that's what happens when the reality of mom toddler life takes over, oops.
It's okay, I'll be the first to admit I had never heard of hip dysplasia either until our daughter was born as overwhelmed first time parents. If you've been following along, it's not news that our experience has asked for more patience than I had ever anticipated. If you're new here, I wrote a previous blog in 2018 where we were certain we had healthy hips. Unfortunately, this was just an up on the roller coaster, and our blind sight of a down was right around the corner.
The What
15% of newborns have some kind of instability in their hips and 2-3 per 1,000 need treatment. Hip dysplasia is a condition where the hip socket does not fully cover the ball portion causing the hips to be fully or partially dislocated. The ball and socket joint of the hip does not properly form. Instability or looseness of the hip joint are common ways to describe it as well. Hip dysplasia is more common in first born babies and about 4 times more likely in girls than boys. It's also more common in breached babies than it is in non breached babies. It comes with a wide range of severity as well. Treatment and timelines can look different based on a number of factors, but methods are bracing, surgery, or in a lot of cases even both.
I'm hoping to share some light on how important it is to be aware of hip health early on. Mama's listen to your motherly intuition, if something doesn't seem or look right, speak up. I've been a part of two support groups online since she was diagnosed and I can't keep up with how many times I've read stories of parents picking up on this themselves. Personally we're fortunate in the fact that Mila's was caught immediately, and then diagnosed officially just a few weeks later. We've been on a very slow path, which is typically not the case but slow and steady is what we'll do. And we're almost there.
[ I want to pause and state I feel vulnerable sharing my feelings and experience, as I know this is a condition that can be treated, it is not something that is life threatening. Life changing, yes, but treatment is there and we're very appreciative. Call me crazy but I sometimes feel "guilty" for when I am open with our worries as we understand there are many unimaginable health issues and realities in this world that other parents face that shatters my heart. I think of what others may be going through on the days that feel hard for us, and immediately snap out of it. My heart just needed to address this. ]
I share this in case you're reading along and can relate, or in need of support. I write this not only as a way to journal her experience so far, absolutely not for attention by any means, but so others can learn and become aware. I share this for the other new mamas frightened at the start of her baby's hip journey looking for reassurance. I hope you know that everything is going to be alright, your baby is still going to be a very happy one. I was once the mom new to this, completely clueless crying and aching for stories to read or someone going through this to relate to and tell me we could do it too. There are numerous resources available that I'm happy to share if you're in need. We also had to make adjustments to items in our everyday routines (high chairs, car seats, etc.) if you'd like to know what worked for us, please leave a comment or email me directly.
The Start
Imagine being a sleep deprived anxious new mama in her 4th trimester (it's real) being told your baby has X Y Z and then needing to ask, "wait what is that?". You then need to make all sorts of adjustments and learn how to do all of the basic things but in a new way. Yeah, it didn't feel great. There were a lot of tears. You would have never known looking back at pictures during her early months; I refused to show her brace on social media. I was having a hard time. As parents, worrying comes naturally, sometimes comes flooding in and takes over. I focused 110% on taking care of her, and my anxiety that came with it. If you can relate to this feeling, I am sending you virtual hugs.
Mila was born with hip dysplasia and at just 6 weeks old put into a brace she had to wear 24/7 for 12 weeks. We could not take it off. This was hard, it was really hard and I won't sugarcoat it. What we originally thought would just be a 12 week brace correction process, has turned into 2 and 1/2 years so far of bracing, endless appointments, and the "one step forward, two steps back" dance.
7 ultrasounds, 6 X-rays, and 2 different types of bracing you have to replace as she grows that insurance does not cover, I mean why would it cover expensive medical equipment....!!??
The Now
Another 6 months comes and goes and she is seen for a progress check. Let me tell you, getting a toddler to cooperate for hip x-rays should be an Olympic sport! I am sweating just thinking of it, pass me a wine.
December 2019 gave us good news, we could remove her brace during the day and only wear it for naps and bedtime. THIS WAS HUGE. And more recently, June 2020 gave us positive news again. Although not what we fully were praying for, we saw slight progress and no longer needed to be braced for naps, only at night while she sleeps. Another win that we will happily accept. That light at the end of the tunnel, I am starting to see.
Rewind, prior to this she was braced again 23/7 for a year. After she turned 1 in November 2018 we received painful news her progress had completely regressed. It felt like all of her previous success and our hard work (it seriously takes a village) had gone out the window. We were devastated. So devastated. It all felt overwhelming. But December 2018 once again proved how strong little ones are, and how in turn it strengthens you, and your village.
I first panicked about how an active 1 year old would be bound to a brace all over again. The rhino brace became part of our lives (or as she calls it her magic seat) and within her first day of this new brace, she was crawling in it! Kids are so resilient. She learned how to walk in this brace and so much more. It was inspiring and I felt some "what if" worries slip away. We were given the okay to remove her brace for things like playground fun or a dip in the pool during the summer, and even to help her learn how to walk fully. This was such a relief.
The Next
We head back to her specialist in December. Another 6 month countdown. We're crossing our fingers for a visit where we can kiss the brace goodbye. I hold my breath every single appointment and even struggle trusting results at first (remember that roller coaster I mentioned?). If you're going through anything with a child, no matter the scale of severity, you know what I'm talking about.
I'd be lying if I said little things don't hurt still, like the fact that she has only gone to bed without wearing a brace for 6-7 months of her life. Caring for your baby in the middle of the night while in a brace is hard. I have tears in my eyes writing this as I know others in our shoes can relate. It may seem so simple to you, and that's okay, but I don't think I'll be able to put my baby to bed without a hard plastic brace and velcro involved until she is at least 3-4 years old. And quite frankly that makes me sad. I think it's natural for us to crave that "normalcy" but we are completely dedicated to this journey and doing whatever it takes. Regardless of which brace she's had to wear without understanding the why behind it, she has handled this like a pro.
So we'll continue to wear this brace every night, mama will pray for a simple "time to get in your magic seat" nightly routine, and count down the days until it can become a memory and princess nightgowns can finally fill our dresser for bedtime.
Hip dysplasia is something that she will continue to have and see her doctor for, but the goal and hope is with extreme care now, she can live unbothered with it moving forward. What's ahead isn't clear just yet and I've said it before that sometimes that feels like one of the hardest parts. But today I feel like the hardest part is truly behind us and I'm trusting the process. I am so proud of her and can't wait to celebrate the day we finally are cleared with HEALTHY HIPS.
Love,
The proud mom of a brave hippy baby
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