Patient Stories

Kalynne’s Story

As first time parents, we were excited and looking forward to having our baby girl in a few months, so when my husbands niece was diagnosed with Hip Dysplasia at a couple months old, we were a little concerned it may be hereditary but didn’t think too much of it for our baby. We fully expected an adorable healthy newborn and lots of cuddle time (no one in my family had ever had any hip dysplasia issues, nor his until then that we knew of, and we’d never even heard of Hip Dysplasia in babies) … Very long story short our daughter was born 12 days overdue, big (9 lb, 14 oz), but seemed PERFECT! She was NOT breech, only risk factors for HD she had were, firstborn girl, and possibly it is hereditary since her cousin had it.

They checked her hips at the hospital and said they seemed fine! We were SO relieved and so we went home, 6 days later my mom took Kalynne and I to her first check up. Our pediatrician checked her over, commenting on how healthy and beautiful she was, then moved to her hips, I noticed he was spending a lot of time there and had a frown. I immediately knew something was wrong and he then showed me that her left hip was dislocating… I remember like it was yesterday feeling so overwhelmed but trying my best not to just cry, keeping a brave front up since I was with my mom… But postpartum hormones, plus that was NO fun, I kept telling myself “it is NOT serious, he said it dislocates but it’s not dislocated”… I knew nothing about it so I basically lied to myself to keep my hopes up… I did NOT want my baby to have to have surgery…

We were referred to a pediatric orthopedic surgeon (one who had thankfully just in the last month moved to our city). Back at home, and after my mom left I remember I laid her in her swing and dissolved into tears… I cried for several days straight (and cried more over the next several months). I felt like I was being SO cheated, and everytime I looked at my baby or held her I just hurt for her and felt so sad for the fact that we prob just had a couple days to cuddle her and enjoy her newborn phase without a brace or cast… Only Hip Dysplasia Parents can understand this but I felt a feeling of “loss”… it didn’t seem fair and frankly I got depressed very quickly (and I had NO normal postpartum depression, I actually was SO happy til that 6th day).

Two days later my husband was working, so my mom took us to our appointment where the Ortho took just a couple minutes to diagnose her with Bilateral (both hips – though I didn’t know that at the time) Hip Dysplasia. He placed her in the Pavlik Harness and set us up for visits every two weeks, and Ultrasound in 4 weeks! At the Ultrasound we found out it was both hips, and more serious than we thought. I was feeling VERY scared because I knew the Ortho didn’t want to try the harness for more than a couple months before they would move to surgery. So we continued our 2 week checkups, and 4 weeks later went for our second Ultrasound.  Her hip had improved, in fact the right hip was considered “good” but the left was still not there… I had hope but it had been 8 weeks.

After the first couple weeks our baby girl figured out she didn’t like being in the harness 24/7, she would scream hours every night due to colic which was made worse due to the fact she couldn’t kick her legs… And she was the crabbiest baby ever! I cried with her most of the time! We were getting SO weary of this deal… I wanted to enjoy her first few months but instead I just wished for her to be older so we could be done with the hip stuff.  We had another Ultrasound where they FINALLY told us her hips looked great despite the odds. That is when it hit me that we were SO blessed, our Ortho looked at the Ultrasound, shook his head and smiled and said “you better be thankful for this miracle, I have NEVER seen hips as bad as hers get better with just a Pavlik Harness, much less in a couple months”… she should of had to have countless surgeries!

My prayers were being answered, she was being weaned out of the harness and she could come out of it for 12 hours per day! That was the happiest day I had had since she was 6 days old. She had been in the harness about 10 weeks, although that doesn’t sound long, when you are in the situation every day is a hardship… it feels like a year. At one point I didn’t think I could do it any more, but FINALLY I saw the light at the end of the tunnel! For the next month she slept (with plenty of fits, of course) in the brace until we finally let her out completely!

They told me she would probably be delayed several months in motor skills and may not walk til 2 yrs old. But she started rolling over at about 3 months old (something pavlik harness kids can’t do is tummy time so we started that at about 2 months old when she was out of her harness during the day), sat up well at 5 months, crawled at 7 months, and pulled up at 9 months, started cruising all over around 10 months, taking steps at 10.5 months and walked at 11.5 months! She was into everything by 12.5 months and now at almost 17 months old she is a normal and healthy little toddler! Running climbing and playing like any other toddler…

There is hope for your HD baby if you are going through this situation… and I am so thankful for this website because I researched and couldnt find much on HD.  It’s not very common, I guess, around here? It was very informative and supportive and helpful for me to see success stories and also know our case could be much worse! We are now expecting a baby boy, and though I know statistically we have a low chance of him having it… it almost makes me panic when I think about having to go through that again.  It was a dark time in her little life, I honestly try to not think about it and when I do I feel like crying and feel sick. I REALLY want to be able to dress my baby normally, hold him normally and cuddle and ENJOY him being tiny instead of wishing it would pass! No one but we HD mommy’s can understand, I know, but at least we do and I know if our little boy has HD also then I can come to this site for support! Thanks for reading and I hope it offers encouragement! =) The first pic is when she was first put in pavlik, the second is at 2 months old, and the third is right after we removed the harness! =)