How We Found Out Vivian Has Hip Dysplasia

Early July, Vivian took a tumble off of her sisters’ bunk bed ladder. This tumble would turn out to be the worst part of this year. But also the best.

Allow me to explain.

The #1 question I get about Vivian is if we discovered her hip dysplasia at birth. The answer to that is a big fat no.

Vivian passed all of her screening at birth. I remember there was one moment right after she was born where they said, “Hmmm. The hips are slightly questionable. But not concerning. It can often present this way right after birth. We’ll check again in a week..” And then at her followup appointment they said, “Oh just kidding. Her hips are perfect. No worries here!“

I was like, “Duh. Obviously my baby is perfect!”

Then at every followup appointment, once again— every part of her passed every screening test.

She crawled on time. She walked right at a year. She was crazy active. (She was climbing her sisters’ bunk bed when this all began!) She was not breech. She was full term. We do not know of anyone else in our family that has ever had hip dysplasia. She had none of the “risk” factors.

It isn’t until this tumble that we had even the slightest idea anything was wrong. (Side bar: Vivian is 2.)

After she fell, she wouldn’t put any weight on her legs. She was crying and seemed in a great deal of pain, so 10 minutes later, I had her at her Pediatrician’s office.

He thought that she probably had a sprained ankle and said we didn’t need to do X-rays because even if there was a small break, there wasn’t a lot we could do for her at this age. He said wait a few more days and see if it resolved itself.

After a few days, it did semi resolve itself. She resumed putting weight on her legs, but she had a horrible HORRIBLE limp, and it seemed to take a lot out fo her to walk. (I had her on Tylenol every 4 hours to control the pain.)

I happened to see Aaron’s cousin at the pool the next day (Friday) and as she watched Vivian limping around, she said that if that didn’t change by Monday, to push for an X-ray. (She is a medical professional and knows her STUFF.)

Sure enough, Monday it wasn’t better, so I called her Pediatrician and asked for an X-ray. They immediately lined one up for her.

I was so worried she had a broken ankle or leg. You an imagine my surprise when they came back and kind of tensely requested to X-ray the other leg too. What?

But what I didn’t realize, is that they didn’t want to see her other leg. They wanted to see her other hip.

Because, as they gravely informed me, both of her hips were dislocated.

We were still assuming that this was a result of her fall, so they rushed us straight to the emergency room.

You can imagine how fun it was to wait there, for 5 hours, in an overcrowded ER, in a pandemic, with a 2-year-old, only to be told that this has been there since birth and they were NOT fixing it. (Apparently they can tell that it’s been there since birth because the out of place bones had started to try to grow new sockets.)

At this point I was super confused. (And cranky. THAT was an emotional rollercoaster!)

The ORTHO people in the ER told me that they set up an ORTHO appointment for us to meet Vivian’s surgeon and to discuss the surgery that was necessary. Great. Let’s do what we need to do.

And so I swallowed my crankiness and went obediently to her Ortho appointment 3 days later (this entire time, Vivian was in a LOT of pain. ER docs told me that she had been in this amount of pain since birth. I said NO. She was not in pain until she fell. They said…we don’t know what to tell you. She’s been in this pain and limping like this since birth. And I said NO she has not. Something caused her pain when she fell. They ignored me.)

And so after dragging Vivian to this ortho appointment, relieved to finally get some answers, you can imagine how frustrating it was to only to be handed a BROCHURE on hip dysplasia. They said, “We won’t touch this. Wait for a call from Boston to schedule her surgery consult.”

I asked about Vivian’s pain and terrible limp when she tried to walk, and the ORTHO doc said, she’s been in pain since birth.

And I said— NO. she was fine until she fell!

This was maddening. My word. As I left that appointment, I realized— the doctor isn’t trying to be frustrating. She just doesn’t know. She doesn’t know what to do with us at all. (I later learned, that our Pediatrician said that he has seen 2 cases like Vivian’s in 30 years. Boston they see at least 1 a week. So Boston was definitely where we should be.)

Anyhoo— it was almost two months before we were able to get our our first Boston visit (September). THANKFULLY, Vivian’s pain seemed to go away after 2 weeks. I cannot imagine waiting as long as we ended up having to wait, if she was in that intense pain the entire time.

(What we have pieced together since, with the help of her Pediatrician— who has been AMAZINGLY supportive through all of this— and her surgeon in Boston…that her hips, yes, have been dislocated since birth. But when she fell on her hips, since her bones were out of their sockets, they badly bruised her, thus causing her pain. There were little circle bruises on her hips.)

But yes. Boston.

I am so glad Aaron drove us to our first appointment, because what we learned there, I literally shut down. I would not be able to drive home had he not been there.

Here’s what we learned:

We would not need one surgery. We would need THREE surgeries. With 2 overnights in the hospital after each surgery. And at least one overnight in town before (because of the covid test) And then MONTHS in a body cast. (This appointment made Addison’s heart surgeries seem a piece of CAKE. My word.)

He also said that we are extremely lucky to have discovered this when we did. This problem was severe, and it was never going to resolve itself. He said she might had made it to her teenage years or adulthood and then have just really, really rough problems-- possibly needing a hip replacement in as early as her 20s. He said being able to tackle it now, while she is 2, is extremely lucky.

Her surgeon at Boston Children’s (Dr. Novais) is FANTASTIC. At first I was frustrated that he wouldn’t do both hips at once, in one surgery, but he emphasized that he ONLY does perfect surgeries. And if he did both at once, you run the risk of the first hip getting knocked out of place while he did the second hip. He wanted PERFECT surgeries with PERFECT outcomes for PERFECT hips.

Oh yeah, okay. I decided that I was cool with that.

So where are we now?

We did the right hip in November (an open reduction osteotomy) and the left hip in December. The third surgery will occur one year from when we take off the cast (to remove the screws etc placed during the first two surgeries)

Basically (this was the other thing that really shook me)— the surgery involves slicing a piece off the femur and using that to rebuild the hip socket. Oh my word it is this whole thing. And you definitely want a surgeon who does this constantly and PERFECTLY.

We have been in excellent hands. First surgery took 5 hours and the second surgery took 6.5 hours (Extra cast change and X-rays and cleanup).

The first surgery felt VERY scary, and taking her home that first time in the cast felt like a joke. Like— are you sure you trust us to leave with her like this? Second surgery felt so much easier. Maybe because we did the exact same thing only 4 weeks later, so we knew what to expect. Maybe it’s because cast care didn’t seem as scary as we had already been doing it for 4 weeks.

We are about halfway through our body cast sentence. January 27th we go down for a cast change (they are doing this in the OR so they can take X-rays and check on her surgery healing).

And then….drumroll please…..March 17th we get the cast off!!!!!

That will be a very exciting day!

We have felt very supported by so many people around us. Loving us as we figure our path through this. We have felt all of the prayers. We very much believe in the power of prayer, and we have felt surrounded and held up the last few months. Thank you.

I am beyond grateful that Vivian has been in such amazing hands in Boston. I am thankful that we caught this when we did. I am thankful for my brave 2-year-old who has just astounded me with her strength.

It has been an overwhelming last few months, and I am grateful to be on the downward slope of the experience.

Body cast life has become our new normal. It’s been a lot, but mostly on Vivian. I can’t complain because I haven’t had to wear a body cast these last few months. I am thankful to be her person. And that I can work from home and be 100% here for what V needs.

She has been so spunky. She has figured out how to crawl around the house— how to flip herself from back to stomach and back again— and to pull herself up a few stairs (while chasing mommy lol). After her first surgery I felt like she was so fragile and that if we touched her wrong, her hip would pop back out of its socket! We have learned that her hip is so tightly packed in there, she is fine to be moved and loved on and let her explore as she wants to. She won’t hurt her hip.

Another FAQ— she does wear a diaper (there is a small hole cut out in the cast). A size 1 diaper is stuffed in the hole, and a size 6 diaper is on the outside to hold it in. It is impossible to keep the cast from smelling like urine Ours usually smells like roses for 2.5 weeks and then….well. I’ll leave that to your imagination. (lining all edges with duck tape has helped so much. Duck tape is a lot more water resistant and cleans up a lot better than the bare cast.)

Another life gem that I have learned. If your child is in a body cast….do not let her eat 6 apples in 24 hours. An apple a day may keep the doctor away….but 6 apples in one day will explode poop all up the back of one’s cast. God bless the person who invented wipes. Added to my resume: “Can stuff a body cast full of enough wipes to soak up a poop explosion.”

Poor girl was so sad when she had her apple intake limited after that. lol.

The trickiest part of this is perhaps to fit this into our lives while caring for 4 other children. And you all know that Addison already keeps us on our toes! But the kiddos have been so helpful and adaptive. The boys carry Vivian around in her cast like she weighs nothing (lol. it definitely weighs more than nothing! Although— her second cast seems lighter somehow than her first cast!) And the girls are so kind to table play with Vivian for hours and hours.

Addison knows that I’m much more likely to let Vivian watch show than anyone else, so Addison will whisper in Vivian’s ear, “Say Barbie. Say Barbie. Say Barbie.” Until Vivian shouts, “BA-H-BIE!” and then Addison yells, “Baby wants Barbie!!! I’ll turn it on.” lol Addison.

Doing this all during a pandemic has definitely added extra stress. Keeping everyone COVID free (and just any germ symptom at all free) so that Vivian can still go to her appointments and surgeries has caused some family sacrifices and deliberate choices to protect V. As well as lots of extra gray hairs. This has been a whole thing that I’m just not ready to talk about yet. But wow. I’m exhausted.

At the beginning of this entire experience I felt like I had already put in my time as mom with traumatic situations. I was done. I have done my time with Addison. I just need everything else to be easy. But it turns out, life doesn’t follow those rules. And what we think might break us, actually does make us stronger in some ways. And breaks us in others. And it all ends up being okay in the end.

Her name is Vivian Joy. She was born on Easter Day. So her name means Life Joy. And we have learned that there is still joy to be found in a body cast. There is always joy to be found.

I am grateful for my 5 perfect babies. I mean, I’ve got one with dislocated hips, another with Down syndrome, at least one son who struggles with his attitude, and lots of quirks among the crew. But I say it again.

Perfect is in the eye of the beholder. And my 5 definitely are. Grateful for a kind Father who sent them to me to mother. Their situations aren’t about me at all, but perhaps my own sanctification comes from giving myself to them. Teaching them about life through doing. And recognizing that their inconvenience is my gain.

I hope I can somehow teach my kids that yes, life will send us hard times. We can’t control that. But we can use the hard times as vehicles for growth— even if the only growth is just— surviving. When you cling to the edge of a cliff as to just not fall—-you may not be climbing the cliff but that’s still quite the accomplishment to hold on.

Here’s to holding on. To motherhood. And to dislocated hips that are no longer dislocated.

xo Deanna