As you may know, Erin has been diagnosed with a hip problem, her hip was found to be dislocated when she was a toddler at 22 months. This appears to be a very late hip dysplasia diagnosis and means more invasive treatment and possibly a less successful outcome. Finding out your child has hip dysplasia as a toddler is frightening, Erin may not be ill but she now needs to endure years of treatment which could have been avoided. Yes, hip dysplasia surgery could have been avoided if identified and treated at birth.
Developmental Dysplasia (dislocation) of the hip
Hip Dysplasia treatment
Statistics suggest that 1 or 2 children in every 1000 have a hip dislocation that requires treatment. However, if clinical signs are shown early and if children are diagnosed quickly the first line of treatment for hip dysplasia in a baby is usually a pavlik harness worn day and night for a number of weeks. If this window of opportunity is missed the treatment often involves surgery followed by months in a hip spica cast. This is what we now find ourselves facing.
Symptoms of DDH
I am a mum of three and class myself as experienced! Yet I had no idea of the symptoms of hip dislocation and now wish I had. The symptoms include:
- one leg appears shorter than the other is a sign of hip dysplasia toddler.
- an extra deep crease is present on the inside of the thigh
- one of the hip joints moves differently from the other and the knee may appear to face outwards
- when a baby’s nappy is changed one leg does not seem to move outwards as fully as the other one
- the child crawls with one leg dragging.
Hip Dysplasia in a toddler
After walking age, it may be noticed that:
- a child stands and walks with one foot on tiptoes with the heel up off the floor. (The child walks this way in an attempt to accommodate the difference in leg length). I am amazed that more doctors are not considering hip dysplasia in toddlers who present with poor or late walking.
- the child walks with a limp (or waddling gait if both hips are affected).
Erin presented with an extra deep crease at her nine-month check, she was not crawling and was reluctant to weight bear. The health visitor commented on this and said Erin would be monitored. I feel very angry and guilty that I did not push for more at this stage. An x-ray at least – but hey I am not medically qualified or looking for problems.
Signs of DDH in a 1-year-old
I received two phone calls during the next few months from the health visitor and I said that no progress had been made on her walking. I was told to wait until 18 mths as the normal range to start walking is up to 18 months. At 18mths Erin was again seen by another health visitor who commented on the creases but nothing more was suggested.
At the same time, I took Erin to the doctors as she was still not walking. Her hips were checked again but nothing suggested. Finally at 21mths Erin started walking, yet it wasn’t the ending I hoped for. I immediately noticed it was with a limp and made another appointment with the GP. This time she was referred to a physio after the GP could feel some crunching on her hip and commented on the deep crease on her thigh.
Here is a video of a toddler walking with hip dysplasia
Hip physio
Two weeks later I found myself in a playroom with a physio. The physio checked her hips and said nothing was wrong. It wasn’t until we were leaving the room that she even acknowledged the limping by calling us back into the room. Her whole tone changed and she measured Erin and claimed that her left leg was 2cm longer than the other. This scared me and I became very concerned, especially when she started suggesting a growth disorder.
I wasn’t satisfied though and made another appointment with the GP I had previously seen. He didn’t record a 2cm difference but referred me to a paediatric consultant.
Hip Dysplasia x-ray
Three long weeks later I had the appt and he immediately suspected a hip problem and sent us for an x-ray. The following day it was confirmed that Erin needed hip surgery. Now a little over a week later I am starting to understand the process that lies ahead. I have been told to expect a years treatment. It is going to have a massive impact on the family, I will need to take parental leave from work, all which could have been avoided if it had been picked up at birth.
The success rate varies and this next section is quoted from orthopeadic topics:
For the child discovered to have hip dysplasia within the first 6 weeks of life, treatment in a Pavlik harness is successful in more than 90% of cases. With successful treatment, the hips develop normally, and no long-term problems need be expected.
For the child discovered to have hip dysplasia later in infancy, treatment is more prolonged or complicated, but good results with a normal hip can be expected.
After the age of 1 year, treatment can definitely complicated, and results more guarded. Multiple operations are not unusual, and a normal hip may not result.
The untreated hip causes a limp, which is not painful in childhood. However, arthritis develops early in adult life, and pain sets in. When pain is severe, joint replacement becomes necessary.
Therefore I want to highlight to parents to push for x-rays or if your baby presents with any of the previously mentioned Hip Dysplasia symptoms because getting a hip dysplasia as a toddler should not be happening.
In the past week, I found so many stories of hip dysplasia being missed. If you suspect a problem with hips or mobility be informed and push for an X-ray or an ultrasound of the hips.
Other useful posts:
Erin and DDH
FAQ about DDH
What is a hip spica and other key terms explained
If you have found yourself reading this blog post because of a DDH diagnosis do check out my other posts for support and advice. The products I found essential for looking after Erin in a hip spica cast was the Totseat The Washable Squashable Highchair and the Doomoo Seat – Baby Bean Bag which Erin even slept in a few nights when she could not get comfy, obviously she was supervised by me.
21 Responses
Thank you. I know this is of little comfort to you and Erin, but this simple blog post could help a lot of parents. Really useful. Wishing you the best of luck on the cycle of treatment.
Thanks, yes that is my aim now. It has really surprised me how often this is missed. I just took it that when they did the hip checks at birth and six weeks that it was a definitive, but unfortunately it is not that straight forward.
Throughout adulthood is one of the most important times to maintain an exercise regimen. This is the ideal time to maintain your weight, build strong bones and prevent many chronic health problems like high blood pressure, heart disease and diabetes.
After reading this I really hope we are not in the same boat, as I really see how devastating can it be for the family. I have an x-ray appointment today for my 17th months old daughter. We have noticed differences in the leg crests for long time and pointed out to numerous doctors. So far after many manual checks of the hip movement no doctor has seen a problem. Last time after pointing out that she is only walking when holding hands and barely they thought there might be an association and they decided to check. So here I am today, biting my nails and reading all this tragic histories about misdiagnosed babies who paid it with surgeries and months of treatments. I really hope that it is not the case for us and I am really terrified.
Hi. I’m so sorry to hear about all the trauma you ad your lovely little girl have been through. I agree totally that DDH is poorly understood by most parents and many health professionals too. My eldest daughter suffered from DDH but we were lucky and it was picked up at a scan at 3 weeks old. She spent 4 months in a Pavlik harness, day and night, which was tough but worth it as she is now a healthy 8 yr old with no issues. It is worth mentioning the risk factors for developing DDH. They are
1) being a first born (tick)
2) being a girl (tick)
3) being breech (tick).
It was her breech presentation that led her to be scanned at 3 weeks old – the paediatrician and health visitor did hip checks manually and did not pick up anything so that just goes to show how crude and unreliable they are. Unfortunately her breech presentation was not picked up until delivery 15 days overdue after 3 days of failed induction and it was only in theatre, mid c section, that they realised she was the wrong way up. I too am angry that this happened and wonder if she had been delivered earlier whether that may have prevented her DDH. Again, a simple ultrasound could have confirmed this but it seems the NHS are good at avoiding cheap preventative tests in favour of major, expensive mending people when things go wrong. Anyway I am very happy that you are trying to improve awareness and if anyone wants any advice n Pavlik harness care I am happy to get involved. Good luck!
Mandy.
Mandy thank you so much for sharing your story. I am pleased to hear that your daughters treatment was succesful. I totally agree that the NHS focus too much attention on treatment and not enough on prevention.
How frustrating for you! Don’t blame yourself for a second for not pushing for an x-ray. It’s such a hard line to walk as parents, you don’t want to be googling and self diagnosing everything and when you’re not trained in what to look for so how could you ever know! Echoing what many others have said, it’s fantastic you are helping other parents to know more about this!
Wonderful points here for parents to check their children at home. It’d be wonderful if the child was caught young so it could be corrected. But, it can be so hard to tell when they are small. Especially if both hips are affected because there’s no difference in knee height or creases. x
How frustrating to have to struggle to be heard when you can obviously see something is not right. Makes you wonder how bad the problem could have got off your hadn’t spoken out about your concerns
So frustrating that the health professionals didn’t pick up on your concerns earlier. I wonder if there is ever any feedback to them about the mistakes they made/things overlooked.
Such a useful post, which I am sure will be such a help to other parents. It is shocking how often it is missed. I have a couple of friends who have gone through this x
I am sorry you had so much trouble getting this diagnosed initially it must have been awful when you knew something was wrong. Thank you for taking the time to raise awareness as I am sure there are many parents that find your blog and get comfort from it, when their own child is going through the same! Have shared your posts on my social media to help in a small way xx
Wow Emma, I cant believe how you had to go back and forth! This is seriously awful to me. i know it can happen to anyone that things are missed but it also saddens me because this could of been avoided for your daughter and you (and family) to have to go through. Luckily we had great dr’s when Archie was born and just because i mentioned i had suspected hip displacement at birth they sent him for a scan when he was a few weeks old. This was a huge relief for me. We were lucky that he was fine so the scan was for precaution but I am so thankful we had a proactive doctor refer us at birth. I think this post will really help so many families I am so glad to have found it for future reference for me too. Thank you for sharing and my thoughts are with you are your family with the operation. I hope it goes really well and that she comes out of it in great health and has a very speedy recovery. x
What a great post to raise awareness, this could help lots of parents and children. Little J had an ultrasound on his hips about a year ago and thankfully everything was okay
I have a dislocated hip too and I know full well how painful it can be. I am sorry about your daughter but I thank you for raising awareness about the condition and I wish something like this could have been diagnosed sooner.
Thanks for sharing this Emma. We are going through checks with Aria now and I will be sure to push after reading this as she is displaying a lot of these symptoms. She is 20 months old so it seems that we may have some tough times ahead of us.
So this is what I was born with. I am now in my late 40s and you’d never know I had anything at all when I was born. But my Mom always said – thank goodness we had an excellent specialist who caught it immediately. I had a harness or brace of some sort on. Let’s face it I was small so I don’t recall it at all. However whatever it was worked magically. Thank goodness. I wish your sweet girl best of luck and to you as well. This is a great and educational post. Thank you. Glad I found it on twitter this morning.
It is so reassuring for me to hear stories like yours, thanks for sharing.
Throughout adulthood is one of the most important times to maintain an exercise regimen. This is the ideal time to maintain your weight, build strong bones and prevent many chronic health problems like high blood pressure, heart disease and diabetes.
Thank you for the informative post.
mad how this is missed..i feel ours was too but too late now as 4 yeads old diahnosed with perthes disease and i am sure looking back this was the cause…my son always dragged 1 leg as a baby…then seemed to walk ok but weaker on the left leg. he fell down a few steps and couldnt weight bear on what seemed like left foot for a few days they said they dont xcray that youbg ses how he is..and itvwent on its own.then age 4 couldnt weight bear at all…and after 6 months then an mri diagnosdd with perthes disease. ..which is his childhood lost as he cant run or jump his hip is collapsing. i feel angry and frusted everyday this could have been prevented and he woukd have a better future if the health visiotor had simply advised us to go for an x ray..as we thought it was just a funny crawl. hope all is well with your girl now xx its so upseting to see them struggling.