Our youngest was diagnosed with Developmental Dysplasia of the Hips (DDH) recently. It came as a shock to all of us at her 6 month old well visit prompting us to find a specialist to confirm. Our journey begins with DDH and I’d like to share it with you.
Our sweet 3rd baby was diagnosed with DDH just recently after her pediatrician noticed some laxity in her left hip at her 6 month well visit. Our journey is just beginning and I am utterly overwhelmed with our path forward. I can only imagine that other parents have been in this situation before or are finding themselves with a newly diagnosed child wondering where do we go next.
What is Developmental Dysplasia of the Hips (DDH)?
According to the International Hip Dysplasia Institute:
Hip dysplasia is a general term for infantile hip instability, dislocation, or shallowness of the hip socket. Hip instability and dislocation are more likely to occur during infancy, while a shallow stable socket is more often discovered in adolescence or adulthood.
The infant and child type is often referred to as Developmental Dysplasia of the Hip or DDH. DDH is generally the preferred term for babies and children with hip dysplasia because this condition develops around the time of birth, including after birth. The term Congenital Dislocation of the Hip is rarely used today because the word congenital means the condition is always present at birth and is usually associated with a defect where something is missing or added to normal tissue. In the case of DDH, the infant/child’s joint is otherwise normal except for the instability.International Hip Dysplasia Institute (https://hipdysplasia.org/developmental-dysplasia-of-the-hip/)
What Causes DDH?
The exact cause of DDH is unknown, but there are risk factors that can make someone at a higher probability of having this condition. The risk factors include:
- First born female
- Family history
- Breech presentation
Our girl has none of those risk factors, though, and she was diagnosed with bilateral hip dysplasia at 6 months old. This is exactly why the pediatrician checks your baby’s hips with a variety of maneuvers from birth and at every well visit. This is also why the pediatrician watches your child walk across the room and checks their gait.
Our Diagnosis of Developmental Dysplasia of the Hips
Our little girl is a perfectly growing little girl! She was our biggest baby coming in at 6lb 3oz. She is also our 3rd child – our oldest is a boy and he’s 8 and our 2nd is a girl and she is 2. She has grown and developed perfectly normal and there were no concerns at any of her well checks….. until 6 months. The pediatrician did the normal hip checks at her 6m well visit and noticed some laxity in her left hip. She double checked and then said “yep, there is some extra laxity there. Let’s get that checked.”
I left there completely surprised with an order for an x-ray in hand. I was utterly shocked that this was happening. We have no family history, and her hips were fine until now. Why!?! I googled, even though the pediatrician told me not to. We started to notice an audible click in her left hip during her regular movements and diaper changes. I took her to get the x-ray about a week later and anxiously awaited those results.
The x-ray report came in the night that she had the x-ray. The report simply said “lateral subluxation of left hip.” I cried…..and cried some more. I googled hoping that meant that it was mild, and then waited for our pediatrician to call me and tell me what to do next. This was a Friday night so I assumed our pediatrician would call me Monday. I knew she was going to say “Go see a pediatric orthopedic” so I did my research and went ahead and made an appointment with one on Monday. The pediatrician did not call me until Wednesday.
This is unlike her to not call soon, so I figured something was up. She apologized and then said that the report she got with the simple statement of “lateral subluxation of the left hip” is not the normal report she gets when she sends a child for a DDH check. She called a pediatric radiologist at a larger hospital in their network and had that radiologist look. This is what had taken her so long to call me. She wanted to have all of the information to give me.
Call from our Pediatrician + Referral to Pediatric Orthopedic Surgeon for Developmental Dysplasia
The pediatric radiologist expressed concern with both of our girl’s hips with the left worse than the right as far as dislocation goes. She also expressed concerns with the underdevelopment of the hips as a whole. The radiologist recommended an ultrasound even though they are not usually done past the age of 4mos. Our pediatrician ordered that. I told her we had a pediatric orthopedic surgeon appointment already so she was pleased with that. She let me know that if we needed anything along the way to let her know and to please keep her updated.
We decided against getting the ultrasound as we weren’t sure if the pediatric orthopedic would want it or not. After talking to a friend who works in a hip dysplasia unit in another state’s hospital, that is what the doctors there recommended too. They told us to wait and see what the orthopedic wanted, as he may want imaging in a certain way.
Appointment with the Pediatric Orthopedic Surgeon
In the few weeks leading up to our appointment I did lots of research and I mean LOTS. I learned about typical treatment paths for children with DDH above 6m of age, and more about the surgical procedures that are done depending on severity. I read a lot about spica casting, rhino braces, etc. and I reached out to friends whose kids have had a similar scenario. I joined some Facebook support groups and tried not to overwhelm my husband with information.
The morning of our appointment, we headed 2 hours north to see the specialist. I was hopeful. I was hopeful that he was going to put her in a brace, have us come back in 4 weeks, and she’d be good. I was hopeful. You see….. 6m is “early” but “late” for a diagnosis of DDH.
First Doctor – Pediatric Orthopedic Resident
First, the resident came in and she asked me all sorts of questions and did her own assessment. She had stated that the left hip was subluxated and the right looked ok, she thought. She also said that the treatment for 6m and older is a closed reduction under anesthesia and spica casting. I asked her about bracing and she explained that in order for bracing to be successful, the femur needed to be in the right place all of the time in the brace and it wasn’t effective for her age and this severity. She said that the pediatric orthopedic would make the final call though. So, I waited.
Attending Pediatric Orthopedic Visit
Our pediatric orthopedic came in with the resident doctor to chat. Our girl immediately smiled at him and he said “I needed that today, she’s adorable.” At that moment he pulled up her x-ray and drew some lines on it. He showed me where both hips are involved and this is a case of bilateral hip dysplasia.
He said that the resident told him that I was an information person and came loaded with knowledge so he went over the basics, and told me the best places to get information that was valid.
He stated that the treatment for this is a closed reduction on both hips in the OR under anesthesia. He’d like to do this in the next month so we can get this rolling ASAP. At this point, I glazed over. It was not what I had expected to hear. I hadn’t expected to hear that both hips required intervention. I hadn’t expected to hear “closed reduction and spica casting”.
He reassured me that the right he is confident would be able to be reduced in the OR with a closed reduction. The left, though, is a “wild card” because of the severity. He will attempt a closed reduction but if that fails, he will have to do an open reduction of the left. Both procedures require a spica cast.
Why Wasn’t Developmental Dysplasia caught earlier than 6m?
This was my main question for the pediatric orthopedic, why wasn’t it caught earlier?! Her pediatrician had done ALL of the normal hip checks, and she was fine. Did we do something wrong? Did the pediatrician miss something? His response was that hers was bilateral so harder to identify in earlier parts of life. Most likely her hips were “even” and felt the same until they continued to develop. Therefore, when more development happened (6 months), the DDH was more evident.
What is a Closed Reduction & Spica Casting?
A closed reduction is where our daughter will go into the OR, be put under general anesthesia and an arthrogram of both hips will be completed. While under sedation and guided by x-ray, the orthopedic will attempt to move her hips into the right place. Once the correct location is achieved, she will be casted from mid-abdomen down both legs to hold it in place.
What if the Closed Reduction Doesn’t Work?
Well….. this is a risk. The orthopedic is confident in the ability to reduce the right but the left seems to be more challenging. If he cannot get the closed reduction correct on the left, he will abort and we will have to go back for an open procedure. This is where he goes in via incision and removes cartilage and tissues that are preventing him from moving the femur into the right spot. This will also require spica casting.
Well, now we wait for our time in the OR to attempt the closed reduction. I ordered some things on Amazon that we will need, my husband is going to build a spica table, and we are soaking up all of the moments that we have with our girl prior to a cast being in the way of a lot.
What Does the Future Hold?
Remember how I said it is “early” but also “late” in treatment of DDH? Well, it is early in the sense that getting this fixed now will allow our girl to be a normal developing little girl. I’ve read so many success stories of children having DDH fixed as kids and growing and being athletic, etc. without ANY issues. The orthopedic will follow her for years, though, to ensure that nothing else happens that is concerning. If something does, we will be able to intervene and fix it fast.
This is all I have for now. I appreciate you reading this far and appreciate your prayers and good thoughts as we embark on this journey with our daughter. I will be sharing our journey along the way in hopes to help me cope and also to help others in a similar situation.