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My name is Andrea, I have a 4 1/2 month old daughter named Isabella (Bella) who was diagnosed with DDH about 2 hours after she was born.
I just spent some time reading Cassidy's story, and it makes me feel lucky for the first time since hearing Bella's diagnosis. Like Catriona, I had never heard of DDH nor to this day have I discovered any family history of it. I also had an easy pregnancy, and delivered an average-sized baby (7lbs 1.6 oz) on her due date after a brief 12-hour labor. Bella was not breech, and I did not have any indications of low amniotic fluid...we are still baffled by her condition. Nonetheless, our pediatrician discovered a hip click during his standard post-birth visit.
Ironically, my husband's best friend (an orthopaedic surgeon!) happened to be visiting us at that precise moment. He also checked her hips and told us that he didn't feel the click. However, he was pro-active and sent us to a colleague of his (a wonderful doctor!!) who is a ped orthospecialist.
Bella's first ultrasound was performed when she was just 6 days old. We were told that she had 'mild DDH'-neither hip was dislocated or dislocatable, but both were subluxable. The specialist told us that he suspected they would self-correct by the time she was 6 weeks old. (I have since learned that is statistically the case with mild DDH)
Unfortunately, when we returned for round 2 of ultrasounds when Bella was 6 weeks old, the ultrasounds revealed that her hip joints had not grown tighter with the passing of my hormones out of her system, as they had hoped. Rather, they had gotten a bit worse!
We left that day with a Wheaton Pavlik Harness. Bella wore it for 23 hours a day (and most days she probably wore it for more like 23.75 hours...I only took her out for baths and poopy diapers) for 7 weeks.
Round 3 of ultrasounds showed that her hip angles had improved some, but that they were still not in the normal range. Disappointed, we left with a new harness (my average-sized newborn has grown to be a very big baby!!
At 16 weeks she was 14lbs, 12oz and 25.25 inches), and were instructed to keep her in it for 16 hours per day. The increased freedom was wonderful for the first few days, but I am a worrier by nature-and have found that I keep her in the harness most days for 22+ hours. I think I am hoping that wearing it more will make them heal faster. Probably just wishful thinking.
We had round 4 of ultrasounds on Friday. This is the last time they will evaluate her hips by ultrasound-we could see ossification this time, so from now on she will be monitored by X-Ray. We meet with the specialist on Wednesday, but I watched closely as the tech measured and I believe her angles are now in the normal range. We are so hopeful that she will be able to come out of the harness a bit more-perhaps only wearing it at night.
But, I've set myself up for disappointment each time I go see the specialist...so I'm trying not to get my hopes up.
I looked through the photo albums (on the Hipkidstory support group) and noticed that the children seemed to have normal development at things like crawling, walking, etc. Though I don't know the stories, that makes me so encouraged.
I have already noticed that Bella is a bit delayed in milestones and I fear that she will be playing catch-up through pre-school! (Getting a bit ahead of myself, I know...but I told you I'ma worrier) I guess I'm looking for more stories of success...and a 'soft place to land' where people know my fears and shock and frustrations.
I feel a bit guilty after reading about all of the surgeries and spicas, as at this point we haven't had to go that route...but I have to be realistic and know that is a possibility.
I read in one of my books that children who don't spend time on their tummies are slow in lots of developmental things (they don't seem to know why-but have noticed this since the 'Back to sleep' campaign started. Bella has very little tummy time because of the harness, and has virtually NO strength in her little legs. She does not try to roll, or push off at all. She is very adroit with her hands and grabs and holds toys-switching hands and putting everything in her mouth. The pediatrician said that she has overcompensated for her lack of development in her legs.
Update from Andrea:
"I am VERY pleased to tell you that Isabella has been harness-free with physiologially normal hips for over a year, now. When it was all said and done, Bella wore the harness from 6 weeks to just beyond 6 months-she is a very tall child and wound up wearing 3 different sized harnesses. (I saved all of them and now have a hard time beliving that she ever fit into the teeny one!)
I was careful to follow the instructions to the letter and often kept her in the harness much longer than was actually prescribed. The final 6 weeks she was in the harness I was instructed to keep her in it for at least 6 hours/day and she wore it while she slept at night, which equated to closer to 12 hours/day.
She was delayed in her initial gross motor skill development milestones (rolling over, sitting up) but caught up amazingly quickly following the removal of the harness. She didn't roll over until about 6 1/2 months, and sat up about a week after that. She crawled, walked, and ran within the normal developmental range.
I do hope that our story is helpful to those in a similar situation to ours. I found your site and the women and stories within to be a great source of information and inspiration. Please let me know if you need anything further or would like photos of Bella in her harness (I have loads of them) to go with the story.
(If you'd like to leave a message for Andrea, you can do so by joining the Support Group. Membership is free. )