Patient Stories
Lennie
The day after Lennie arrived she was diagnosed with hip dysplasia, 8 weeks later we started the hip journey.
We first started with a pavlik harness, which was put on incorrectly and cut lennie along her stomach and her armpit, I couldnt handle watching my girl scream in pain so i cut it off of her with scissors. We went back the next day to have another pavlik put on which I demanded the ortho herself put on. 4 weeks in we were told the hips were looking really good. 8 weeks in we are told its not working and now we need to discuss a closed reduction. Our ortho would not do the surgery prior to 6 months so we gave the rhino harness a shot, which required an xray, I was asked to step out of the room for said xray, when I returned Lennie’s lip was cut open, after shoulder checking the xray tech because he refused to get out of my way I filed a complaint with the head of imaging at the children’s hospital I still don’t know to this day what happened in the room.
The rhino failed.
Then we were booked for a closed reduction with a tendon release, this was an awful experience handing Lennie over to the surgeon and going to the small waiting room to sit and wait over an hour until we could see our baby in the recovery room. Which was another nightmare she was so confused and vomitting from the anastetic, we were sent for a CT scan before we left hospital. The CT came back saying the left hip had slipped so the cast was removed before we were sent home.
We were booked in 2 days later to go thru this crap again. Handed her over again went into the waiting room, waited for 1.5 hours to go into recovery and see her once again hysterical. We later found out the doctor had taken an x ray machine into the OR and the first cast they put on did not hold the hip so they had to cut it off and redo the cast (so we were sent home in our 3rd spica cast)
6 weeks later yet again I am handing my baby over so they can put her to sleep for a cast change (cast 4).
5 weeks later cast is removed and were told the dreadful news her right hip was completely dislocated.
We are now scheduled for an open reduction, this was by far the worst hospital visit, surgery went an hour over what they expected, leaving a nervous wreck of a mom in a waiting room watching the clock tick and not having anyone come to explain what was happening drove me into a hysterical break down(cast 5, 4th round of anastethic, this cast however was half cast only right leg).
The day after surgery we are sent for a CT to confirm hip is in, we got some good news it is in, however the cast was so tight Lennie was having trouble breathing, so they now had to pull out the saw and crack the front of the cast, that same evening we are in the emergency room for rapid breathing and a high fever. At this point I had a breakdown, hyperventalated, cried so hard i almost puked, thank god I had my husband there to talk to me thru everything. They don’t know what caused the fever to spike but it broke in the ER.
2 weeks into cast we had xray that confirmed hip has stayed in place, and ortho was very happy with left hip as well, which was not casted this time but it was the initially the worst hip of the two.
September 15 we got the cast removed and told we have healthy hips!!!
12 weeks later we are hit with yet another gut punch from ddh, the left hip is not sitting how the doctor wants it to. So we are looking at yet another surgery followed by a spica in our future, because the hip is not dislocating this surgery is being pushed until she is 2 or 3.
No one mentions ddh at any pre appointments, no books mention it. I had ddh when I was born but I was sent home in a brace for 3 months I had no idea what happened if the first harness does not work. This journey has been a roller coaster of emotions for us, I feel like our first year was robbed of so many things because of countless doctors appointments, surgeries, casts etc. I learned I am much stronger then I thought I was and that my daughter is an absolute rock star. We plan on enjoying this next year to the max!
