Hip Dysplasia Awareness Month – June 2019
Lily Sage’s Journey with Hip Dysplasia
Five months ago, our sweet Lily Sage was born. If you haven’t followed my stories, Lily is one of my best friend’s daughter and my niece! Little Lily Beart was born with hip dysplasia, and we are celebrating her 5 month birthday as well as the end of her journey in the Pavlik Harness because it is Hip Displasia Awareness Month!
I have teamed up with Rebecca, Lily’s mom (@Hip_Baby_Mama), to tell her story in hopes that it can help other parents going through the same thing!
From Rebecca
She is perfect, right? To us, yes, no matter what! To the doctors? Well, their job is to find any imperfections to fix and to help our baby girl grow big and strong.
So imagine this… I’m a first-time mom, in a postpartum room alone waiting for daddy to bring me food (I hadn’t eaten since the night before) and for the nurse to bring Lily back from her check up with the pediatrician. I was overjoyed when they rolled her in and couldn’t wait to scoop her up. The pediatrician came in with the nursery tech and I immediately thought whether that was normal.
Well, it wasn’t. The pediatrician was there to tell me that they found that both hips were not “right” and that they already called a specialist at John’s Hopkins Hospital to see her as soon as we were discharged. My stomach did flips and I don’t really remember hearing much else because I was alone and scared with a new baby. The only thing I could muster up to ask was, can I still hold her?!?! The doctor assured me that she was in no pain and of course I could hold her!
When daddy came back in the room he immediately knew I was upset and through my tears, I tried to explain. I couldn’t remember much. We called the doctor and asked her to come back to talk to us again since I had my cool, calm and collected other-half with me now…
NEXT
The pediatrician comes back in and basically, gives us the rundown of what she noticed. She explained that Lily’s hip was “clicking” and that the hip joint wasn’t in the socket. She advised that one hip seemed more severe than the other but that this was a “more common, fixable problem.” She used the words “hip dysplasia,” “harness,” “surgery,” and all I could think was, why did this happen?
Well, curious daddy is always asking questions while I am crying 🙃 so he asked and the doctor graciously gave us a few statistics and causes of hip dysplasia.:
- First babies are more likely
- Girls are more likely
- Breech pregnancy
- Family history
- Womb positioning
We hit numbers 1 and 2… and possibly 5, but we will never know. She again reassured us that we did nothing wrong and that this just happens. She also said that Doctor Sponseller was world-renowned and he would be calling us asap to get her in as soon as we were discharged. He was currently in Florida at a conference but responded to the call from GBMC and had enough care and concern to get Lily in on Monday at 3 days old to begin early intervention. We immediately felt a sigh of relief knowing we were working with a doctor who cared so much about our baby girl.
Did I mention I am a special educator? Early intervention is always the best for anything! No matter what it took, we would make it to Dr. Sponseller that day, even if I had to walk (I can be dramatic, ask Scott LOL).
Our First Appointment with Dr. Sponseller
So here we are with a 3-day old baby girl sitting in the waiting room of a world-renowned orthopedic doctor. So many thoughts are going through my head. What I refused to do was Google ANYTHING before I saw the specialist, that’s the worst thing anyone can do, although I am super guilty of doing it 🙄. I’m sitting there wondering, is this going to be something that will carry through adulthood? Would she play sports? Will she need surgery? How will they fix this? Does it hurt?
We go back into a small white room, just a few chairs, and a hospital bed. It’s quiet, bad lighting, and bare walls. My mind is racing, I’m sweating (I never sweat) and I’m looking at this sweet innocent face and want to take her and run! Before I could even process everything, Dr. Sponseller walks in.
I liked his style, the first thing I noticed was his bowtie! His first words were “congratulations on your baby girl, it’s nice to meet you!” I took another sigh of relief and he began asking me all the same questions…
- Is this your first child? -Yes
- Was she breech? -No
- Is there a family history? -No
He examines her and I can tell it’s not good news. He called his student over and said, “This is more profound than usual for an infant, you can feel it.” And it hit me again. The waterworks came flooding, my heart was racing, and I could no longer take in everything being said.
The Pavlik Harness… It looks like a torture device.
Ok… I’m crying my eyes out sitting in this bare room, knowing nothing about what is happening and still in my head I think about grabbing Lily and running. Again, before I could process the situation, a man with a white contraption walks in. He has this look of sorrow on his face. Of course, I didn’t know if he felt bad because I was bawling or because my baby was going to be strapped in this for who knows how long.
The first thing they tell me is that they are unsure if insurance would cover it… I didn’t care. I would have drained my account to make sure she had what she needed. Come to find out for all those new moms going through the same thing, we are the lucky ones. The harness only cost eighty dollars, a treatment we can all bare.
The man and the nurse opened it up, laid it out on the table and start strapping her in… she was a better sport than the big cry baby in the corner (yes, I am talking about me.) They told us her legs needed to stay at a 90-degree angle and that she was super tiny but would grow into this… thing… oh and to keep it clean you can only spot clean it…
ummmm… it’s white and I have an infant… great that should be easy and fun.
Back to the doctor. He advised us that we would keep her in this thing for 24 hours a day for up to SIX MONTHS! WHAT?!??! In two weeks we would return for an appointment and an ultrasound… Okay, we are going to take this just 2 weeks at a time… Ok… I can do that, right?!? I’ll do anything for her… it can’t be that hard… 2 weeks isn’t that long.
OUR FAVORITE RESOURCES
International Hip Dysplasia Institute: This was certainly my favorite resource through our journey with Lily, but honestly, we listened to our doctors and learned as we went.
Mama_llama_designsus: One was we embraced this diagnosis was by having fun with it and empowering Lily to feel comfortable in her own skin. We had no idea how long she would need the brace or if the problem would ever fully correct itself.
We never wanted her to feel ashamed of the journey she was on, so we all sported attire to raise awareness and celebrate! Mama Llama Designs took my visions and brought them to life!
The Relief
Two weeks turned into 6 weeks… at 6 weeks we went back with our new shirts “hip baby mama” and “hip babe!” Doctor Sponseller noticed them right away, and with that happy introduction he delivery the news to us. She has to stay in the harness for just 2 more week and ONLY at night! We had a celebration with the staff AMD took our pictures with Dr. Sponseller to put in their hallway. During her 4 months check up, not only did Dr. Sponseller get his own t-shirt to wear, but Lily was also cleared for take off, you know, crawling, walking, running!!! We took our picture with the four of us wearing our shirts.
We do have to go back when she turns 3 and through her teenage years to tale all precautions but those six weeks that felt like a life sentence at first are now a blip in our past and was such a short amount of time to give her a lifetime of healthy hips!
So for new parents out there traveling the same path with your baby. Know there is light at the end of the tunnel, and there is a celebration of growth in your future!
The following photographs were taken by Jes at MaeWood Photography
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