Our Journey With Hip Dysplasia

It’s been almost two years since we found out our little boy had hip dysplasia. I think it’s taken me about that long to come to a place of being able to write about it. Lots of tears, hard days, long nights, and haunting “what if’s” have happened in the process of getting to this place, and I’ve mustered up enough focus and courage to write down all the details.

There is nothing glamorous about our journey. We were (and still are) just a couple of new parents who were learning as they went and had some really hard stuff happen. People tell us they could never go through what we went through. Well, neither could we, friends. I don’t know that there are many times any of us really feel prepared to deal with the trials that are handed to us. But God always gives grace to walk through what is required. We ended up stronger and more in love on the other side simply because of the saving grace of Jesus and the loving arms of our family and sweet friends.

I hope our story is an encouragement to the other moms, dads, friends, grandparents, and siblings who are going through hard things that feel too big or too long-lasting to make it through, or are walking alongside their loved ones going through trials that don’t seem able to be conquered.

Leland was born with a click in his hip. As the midwife went through her series of tests to make sure our new baby was healthy, she began rotating his hips and discovered that one of his hips popped a little went rotated a certain way. She suggested we take him to a pediatrician to get it checked out.

Due to the aftermath of our birth, and all of the madness that surrounded our next few months postpartum, (blog posts coming on that) we were not able to take Leland to a pediatrician to get his hips looked at till he was about four months old. We had noticed his legs looked a little uneven and that he moved one of his legs differently from the other. At the appointment, the pediatrician could slide his right hip in and out of the socket with no resistance and told me that was a big deal and could possibly be hip dysplasia that would need to be addressed. He had us schedule an appointment with a pediatric orthopedist (a kids hip doctor) at Children’s Hospital within the next couple of days.

There’s nothing quite like taking your baby to the hospital. It was overwhelming, intimidating, and made me feel way in over my head. This was where people took their kids when something was wrong. My kid was fine. Nothing was wrong with my kid. It made me feel like a bad parent. Like I had done something wrong to be here in a place where there was so much hurt and sickness and fighting against hopelessness.

Leland was diagnosed with hip dysplasia, which I had to research a ton since I didn’t even know what it was. For Leland, it meant that either in the womb or during birth his right hip had not set properly. The ball of his hip was not firmly placed in the socket, and so it had been developing too shallow for the first few months of his life. Tissue had filled up the empty space in the socket, and so his little hip was unable to function correctly with full range of motion. If we had caught it sooner, if I hadn’t have had so many issues after the birth that we were taking care of, we might have found it earlier and he might not have needed such drastic intervention. There have been a lot of what if’s that have taken a long time for my mama heart to let go of.

We were given a Pavlik brace to try. It attached to Leland around his waist and held his feet up in stirrups to see if we could push the ball of the hip back into the socket. We were told he couldn’t wear normal clothes, we were supposed to have him on his back as much as possible so the brace and gravity could do their work, and that if he stopped moving his legs for very long it could be pinching a nerve and we needed to take it off of him.

My mother-in-law came to give Connor and me a break for the evening so we could have some time together and gear ourselves up for a potentially long night. We tried the Pavlik brace through the night that first night. It made me cry a lot. Leland cried a lot. None of us slept much. And the sight of my sweet, happy baby in a weird contraption hurt my heart so badly. It makes me cry writing this now thinking about how many smiles he still gave us, and how consistently he continued to bring us joy in the middle of things that were so hard for us. We were told at the hospital that the younger they are, the easier it is on the child and the harder it is on the parents. We were supposed to act like it was normal, and whatever we were going through would become their normal and be ok.

But it never felt ok. Slowly, over the course of the next day, he stopped wiggling as much as he normally did, so we took the brace off and went back to the hospital to try to get it refitted and try again. He stopped wiggling even sooner the next time, so we saw the orthopedist again and did more assessments.

Our next option was surgery. Due to the hip socket filling with tissue, there was really no place for the ball of his hip to go. They would have to go in, scrape out the hip socket, and place the ball in the socket. Because he had not been able to move his leg correctly, he had lost some range of motion, and one of the muscles in his leg had shortened. The doctor would have to cut that muscle so it would be the proper length and would allow his leg to be in the right position along with his hip. The surgery would be on the more invasive and intensive side, as far as hip dysplasia went.

We took our baby in for surgery when he was six months old. Still the same feelings of “we shouldn’t be here” and “my baby is fine,” mixed in with all of the “how can I subject my baby to this,” “I’m a horrible parent,” and “isn’t there any other way?” His surgery was in the morning, was expected to take several hours, and we would be kept overnight to make sure his body had handled being under and coming out of anesthesia all right.

Our parents, Connor’s grandparents, and some of our friends from church, all came to wait with us at the hospital during the surgery. We gathered and held hands and prayed together as the surgery began. And we cried. I think the actual event allowed Connor and me to admit that it was hard. That our baby was having surgery. That despite all the horrible things that had been triggered by his birth, we loved him deeply, and hated what he was having to go through now.

We were given updates about every half-hour to hour, and, after what seemed like forever, I was called back to see him. They had hoped to get me back before he woke up, but he was crying when I first saw him. His throat was irritated from the tubes that had been in during surgery, so his cries were raspy. I started crying as soon as I saw him. His face was chubby from all the fluids, he seemed not alert or able to focus, and there were baby IV’s in his hands wrapped with gauze to keep him from pulling them out. And there it was…his cast. It started at his waist and went all the way down to his ankles on both legs. There was a little cut-out to shove a diaper in. There was something wrong with my baby, and this very visibly said so.

I was encouraged to nurse him to help him calm down, but since we normally nursed to feed and not necessarily to comfort, he wasn’t super interested. So I sat in the rocking chair with him, snuggling him, kissing him, and holding him as still as I could so I wouldn’t cause him any pain by moving him. I cried pretty hard then, with my sweet little baby in my arms, and I think that’s how Connor found me. It seemed like my fault. I had had issues after the birth. I hadn’t been able to take him to the doctor earlier. I couldn’t make the brace work. I had signed all the papers allowing them to do this to him. It felt like my fault.

We were given a room, and our goal was making sure he came all the way out of the anesthesia all right and then pain management. If everything looked ok the next morning, we could go home. We had to give him pretty strong pain medications, because he would wake every twenty minutes or so screaming. We found later that it was probably just his little body getting rid of the anesthesia, but there was no way of knowing that then, and we gave him regular doses of pain meds. He did as well as could have been expected through the night, and he was even giving smiles and talking a little in the morning.

There was supposed to be a special car seat for us at the hospital, that we would rent and return when his cast was taken off, but someone had overbooked the seats and we were stuck waiting for several hours as someone searched the hospital for a spare. They didn’t find one, so the car seat specialist came to our room and we were able to get Leland to fit in his regular car seat for the drive home. We would need to rent or buy a new car seat when we got home.

Going home was relieving and terrifying. Leland’s pain seemed to be ok, I felt like I knew how to shove the diapers in the little cut-out, and we had been shown how to keep his cast clean. But this was our first child. We didn’t know what having a six-month-old was like normally, let alone one who had had hip surgery and was in a cast from the waist down.

But we adjusted slowly. His swollen chipmunk cheeks were back to normal within a couple of days, he had weaned off all medicine in about the same time, and he was back to seeming like himself much sooner than I had expected. We researched and bought a new car seat that would help him sit more comfortably in his cast, we modified a Bumbo seat to help his legs fit so he didn’t have to lay down all the time (the Bumbo was a life-saver for grocery trips!), and discovered a few of his bouncy seat toys still worked if we removed the seat and put in his Bumbo!

We went back to hospital for a cast change after six weeks. Babies grow so much, that leaving one cast on for longer than that can mean stunting their growth. They had to take him back and put him under so he wouldn’t move during the x-rays and casting, but we were able to make sure all his vital signs looked normal and then go home within just a couple of hours.

As I became a little bit more removed from the initial hurt and overwhelming feelings of his first surgery, I was able to gain some perspective. The trip to the hospital for his cast change was still hard, but I remember so clearly my eyes being opened to all the others parents and kids around me that day. There were so many kids with needs visibly so much greater, more permanent, or more fatal than Leland’s. And parents who were walking these roads with their children. God used that day as a gentle reminder to me of His grace and how He has such a perfect and unique plan for each of us. We are not called to walk someone else’s road, whether it seems better or worse than our own. We are only called to follow where He leads us. And He is such a good Shepherd.

Due to insurance, we ended up getting Leland’s cast off a week earlier than expected, just in time for Mother’s Day. The complications with our insurance throughout the entire process, and up to a year afterward, could be a whole blog post by itself. It wasn’t pretty. Having to deal with all of that on top of the stress of going through hip surgery and trying to do what is best for your baby was absolutely horrible. But after hard-fought phone battles and over-paying on several bills, we are finally done dealing with the insurance and hope to never have to deal with anything like that again.

The nurse cut Leland’s cast off with a little tool that looked kind of like an electric pizza cutter. She said they had safeties on them so they wouldn’t cut through to skin, but she nicked Leland’s leg in two spots cutting off the cast, and he still has little scars from them. That was a little irritating and it took quite a bit of self-control on my part to choose to use kind words during the rest of our visit. The staff suggested giving Leland a bath, because his skin would be a bit raw, sensitive, and dirty, but the appointment was right in the middle of his naptime, so he wasn’t very interested in doing anything except leaving so he could sleep.

They gave us a Rhino brace for him to wear all the time, until he felt comfortable and could be weaned off of it during the day. All the muscles in his torso were basically nonexistent, so he would be very floppy and still need a lot of support for a while. We had him in his brace fairly often during the day for about a week, and then he seemed comfortable enough to only wear it at night. He still laid with his legs spread wide just like they had been in the cast for weeks afterward. It took his body quite a bit of time to adjust to holding his legs straighter.

Eventually, Leland started rolling over and sitting up on his own. Every little milestone seems pretty huge when you weren’t sure if they would ever happen at all. We had gotten the diagnosis for his hip dysplasia right around the time that he had begun rolling over. He could only roll over to one side, which we now know was caused by his faulty hip on the other side. To see him begin to roll over to each side and to build all the muscles in his torso, legs, and hips was reason to celebrate.

It took a bit longer than he had hoped for him to crawl. He showed some signs for a while, but never quite got the hang of it. We did one session of physical therapy to get some ideas for exercises that would help build his muscles, and within a week of that he was crawling on his hands and knees. More celebrating.

Using some of the exercises we were given by the physical therapist, he began pulling up and scooting on the side of the furniture about six months after getting his cast off, and it wasn’t long before he was walking all over the place. At two years old now, he seems to be all caught up developmentally, runs, wrestles, and is even starting to learn to jump.

It’s been such a long, hard journey. It was hard. It still is hard. Just a couple of nights ago, we let him go to bed without his brace for the first time in almost a year and a half. Every time I change his diaper, I see his big scar running along his right hip. I cried several times writing this blog post, because remembering the hurts and the hard days still brings an ache to my heart.

But it’s ok.

It was a successful surgery. He adjusted. It did become our normal. He didn’t know any different. And now we as his parents don’t know anything different. He laughed and cried, he learned to play, use sign language words, and eat Cheerios all in his cast. He went outside in the sunshine, he got kisses from grandmas, he sang songs, and he had tickle fights with his daddy.

It is well.

“It is well with my soul.” That has become one of my favorite lines from that hymn. It is on plaques in our house, written all over my Bible and journal, and it has been clung to through many seasons of hard things thus far. I used to view it as a weird expectation that no matter what I was going through I could be happy or feel calm. But as I’ve traveled down roads that have pushed me far beyond what I could handle, I’ve realized that line is more of a promise. It will be well. God is making it well. He is Who He says He is, and even when I’m drowning He is still good and able and sovereign as He walks with us through all the feelings that are anything but happy and calm.

He is so good.

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