I thought I’d take a page to tell the story of Erin and DDH so much of my blog features Developmental Dysplasia of the Hip (DDH) yet for new readers and those looking for information about DDH there is no obvious starting point on my blog.
My third pregnancy was beset with minor niggles, I don’t enjoy pregnancy and don’t bloom. I had severe sickness, gestational diabetes and low blood pressure. Routine scans showed the baby was growing quite large and I was closely monitored with very regular scans. Finally at 37 weeks it was decided to induce the following week – relief washed through me!! I had a large team on standby as the consultant had warned of shoulder dystocia. However after a relatively easy delivery (I only passed out once and went into shock!!) my beautiful baby Erin was born, weighing 8.12 (so actually smaller than her brother had been) on 17/11/09 at 7pm exactly.
After a good nights sleep and the usual checks in the morning we finally were allowed home in the afternoon. Erin slotted into our family so easily and was such a contented baby, although she wouldn’t breastfeed like her brother and sister had. At her six week check no problems were picked up and family life continued.
As Erin developed we noticed that she was reluctant to weight bear, although she rolled and sat. At Erin’s nine month check (when she was actually 11months) with the health visitor I raised my concern, the health visitor agreed that Erin was a little behind with her mobility. The health visitor also noted that Erin’s leg creases were uneven. I was told this would be monitored. I was also told that as a third child Erin was probably being lazy and spoilt by her siblings. At this point if we put Erin’s feet onto the ground, or tried to stand her on our laps she immediately pulled her legs up and would not take any weight herself.
The promised monitoring involved a phone call at about 14 months asking if Erin was walking yet. I replied saying no, but she was now crawling. It was suggested I take her to the doctor at 16 months if she was still not walking. At about the same time Erin was having repeated ear and chest infections, each time I mentioned the creases and the not walking. Each time I was dismissed. The health visitor came to see us at about 17 months and said that as Erin was still a bit behind with mobility they would do a full assessment and the 2 year check at 18 months. I haven’t heard from the health visitor since that day.
At the start of August Erin finally started walking, as soon as she did it was obvious that something was very wrong. Erin had a severe limp and turned her foot in. It became apparent that Erin’s legs looked very different lengths this was the beginning of the realisation that Erin and DDH was about to be diagnosed.
After an emergency doctors appointment we were referred to a physio. The physio at first said there was no problem and it wasn’t until we were walking out of the consultation that she spotted the limp, calling me back in she said there was something very wrong and that Erin could not be putting it on. This made me see a red mist, I for one knew that an under 2 yr old can not possibly put anything on. The physio referred us on again, this time to orthotics. I took her back to my doctor, this time with frustration and emotions running high I broke down in the doctors room and said that I knew something was wrong. He agreed saying that he could feel the hip crunching. We were also referred to a peadrcitian for an urgent appointment. This urgent appointment came three weeks later. As soon as Erin walked in, he took one look at her and said it was a hip problem, the creases, late weight bearing and walking were all markers. We went straight down for an x ray and the following morning I got a call to say that Erin’s hip socket is flat, its severe, been like it since birth and she had been referred on yet again, this time to orthopeadics. That appointment came through within two weeks, we now had a name and a reason for the limp Erin and DDH.
By this point I knew that Erin would require a spica, I had spent hours googling and researching treatment. I expected to be told Erin needed 12 weeks. I even spoke to my headteacher about having six weeks off, nursery agreed to take her after the initial six weeks. I went into the appointment by myself feeling strong. I left after about 10 minutes in such a state. I held it together until I got in my car. Then the tears fell and they didn’t stop, as I sat in the car with Erin strapped in the back I couldn’t believe how much life was about to change. I had been told that Erin needed 18 weeks in a full spica, followed by surgery when she was two and a half, followed by another spica. All in all treatment was going to last a year or so.
You could have knocked me down with a feather. I was heartbroken and very angry with the health professionals who had missed this time and time again, even when Erin has the classic signs and symptoms. I have taken a year off work to care for Erin. Thankfully I have been able to claim Disability Living Allowance (DLA HRC) which if anyone needs any advice on I am more than happy to share. I was awarded this within a week of applying but know of many that are refused.
Throughout the blog you will find out how we have coped, the frustrations and how the treatment is progressing. If you are also travelling this road or just want to help Steps is the charity that offers help and support with the tagline ‘we don’t take walking for granted’.
Thanks for reading and do keep coming back to check Erin’s progress. If you want to contact me please do on emmabradley147@gmail.com
If you have a story on DDH and what to write it and share your experiences I will happily post it here as there is not enough known about this common birth defect.
Related posts include:
Signs and symptoms of DDH
AN UPDATE
We are now nearly two years post spica and DDH is still at the forefront of my mind every single day. Erin is making great progress but the legacy remains. She does not walk far, she still struggles with steps, and daily mobility is challenging. The limp is slowly disappearing until she runs. Then it is a reminder that she is different to her peers.
Next Xrays are in Aug 2014. At this appointment we will know if work is required on her femur.
In October we were asked to speak on the national news abour DDH and the link with swaddling after prof Clarke’s research suggests swaddling can be a risk.
Erin in print for swimming and DDH
30 Responses
I feel your pain, my little boy has DDH in both hips, the left more servere, cause my son is fully disabled both mentally and physically the importance of his hips has been ignored. After a year of fighting we finally go to see the specialist next week. He already has Piedro boots with a rise so that he can go in his standing frame as his leg muscles are nearly non exsistant, we have been warned he will be in full cast for at least 3 months but possibly a yr if they have to break his pelvis, it’s another thing in a long list for my little boy. I hope your little girl finally gets the help you need, it’s awful how lax the NHS can be, but I wouldn’t also be without them x
I hope you get the answers and treatment your son deserves. I think it is the lasck of continuity in the NHS that is most frustrating. If only we could keep seeing the same specialists, rather than being passed amongst so many. Thankfully Erin’s consultant and team have been great.
Gosh it’s scary how you have to fight to find answers, you always expect health professionals to be in the right and know everything… must have been so frustrating for you when you found all this out and I hope your little girl is doing well, she’s gorgeous!
I nearly cried as I read this. I take my son nearly walking at 9 months (cruising confidently around the furniture for now) for granted, I forget to think about other people who don’t have it so easy. I admire you, Emma … and all the best to your family.
I cannot believe how lax your Health visitor was, I moan about mine but she listens to any concerns I have and even calls me back to see how we are getting on.
I had gestational diabetes with two of my pregnancies too!
I hope that the treatment goes well, and you and the family get through a best you can.
Your little lady is adorable!!
Thanks Kara, I just hope Erin’s story raises awareness of hip dysplasia – which is still not detected early enough.
Aw its so worrying when your child has a condition like this.It must be difficult not to wrap them up on cotton wool!
Dear Erin. Thanks so much for linking up to the BritMums Special Needs roundup. The first I even knew about DDH was when Jane from @northernmum wrote her heartfelt post about her little one. Thanks so much for raising awareness. Sometimes I take Aleyna’s physical capabilities for granted xxx
Oh how heartbreaking for you that your precious little girl is having to undergo such a difficult treatment. It must have been so frustrating for you that no-one listened to you sooner, they think we don’t know our children don’t they? Big hug.
Thanks, I know we will get there it is just a long treatment plan.
My friend’s little girl also had DDH and I felt so sorry for her and when I saw photos of her on facebook after her operation. Her splint has been removed now though and she is such a happy little girl, running around and making up for lost time! Good luck and all the best to Erin and your other children too x : )))
God that is a grim diagnosis – it frustrates me so much that parents aren’t taken seriously by medical professionals earlier in the process. I do hope that things go as planned now that you know what you have to deal with, and that time passes without too much angst until she is sorted
shocking that they took so long to pick this up. My experience (personally) was a bit grim too, docs not doing things right etc but that was 30+ years ago and you would expect better in this day and age. She looks adorable and if she’s anything like I was or the kids I have met I bet nothing stops her and she finds all weird and wonderful ways of overcoming her mobility restrictions! xxx
I just stumbled on your site and read about Erin’s experience with DDH. I cannot believe that this was not picked up immediately. My daughter Tatiana, was diagnosed with DDH in both hips. No socket whatsoever, but it was picked within hours of her birth. The registrar ordered an appointment with a generous paedeatric obstetrician who donated time to public cases. He had her x-rayed and bound up in a velcro and webbing harness within 24 hours. We had to keep it on for 14 weeks 24/7. Which at the time broke my heart, especially when I took it off to bath her and she spent the entire time with her legs and toes pointed completely straight. It must have been a brief respite. She is now 21 and walks fine. I hope Erin’s treatment goes well and you all get through. x
Just wanted to say Hi, and so sorry to hear about your lack of health. I had 2 prem babies and my health visitor was as useful as a chocolate teapot. She came and checked my eldest when he was 8 weeks old and just home from SCBU and I raised concerend about him being floppy and not feeding, sleepy etc. She said he was fine. I then rang my doctor as I was not happy who saw him and said he was fine. 2 hours later he had still not fed and was still floppy so I turned up back at the doctors – saw the same one who still claimed he was fine and I was feeling over anxious after just getting him home, an hour later he was violently sick and started going blue, rang the doc again who told us to go striaght to A/E, as it ‘didnt sound right’. 4 hours later we were watching him receive manaula cardiac massage to keep hm going and being bagged, our local hospital didnt have small enough equipment as he was still under 5lb, and we were transferred by a specialist team with our son on life support to Great ormond street. I have never seen that doctor again and gave up on the health visitor at that point – she also said she thought I had post natal depression, asked me to fill in a questionnaire and then never mentioned it again – I ended up needed councelling. Other than that I can not fault the other medical professionals we have seen, they have been fabulous.
Hi Emma,
This is so like my daughter Sandi’s story! Had the ultrasound at 8 weeks and told all was fine. At about 15 weeks felt as though her hips were crunching so mentioned when I went to baby clinic. They said she was ‘just growing’ so I believed them-as you do! Had many friends with babies the same age and while they were starting to walk Sandi was quite happy to keep crawling around. At about 14 months she started walking a little more but she never quite looked ‘right’ I just thought ah! They all look a little funny when they first start walking. Her 12 month check came and the health visitor said nothing As time went I became more concerned so at 16 months I took her to the gp. Obviously, an examination at a that age is not as easy as it sounds so he was not overly sympathetic but did refer us to the Orthopeadic dept at the local hospital. As I work in the hospital I was able to pull a few strings and she was seen the following week. I was sure everything was going to be fine and went along alone telling my partner not to worry. Wow! What a shock. Like you the first thing I did was visit my boss saying I was going to need a lot of time off work as this was just the beginning. We were told that she had DDH and would more than likely need surgery. We saw a Paediatric Orthopaedic specialist at another hospital about 2 weeks later where we really found out all the details. This problem had been picked up on the 8 week scan but the radiographer had not noticed it! Now Sandi would need open reduction, 4 weeks in a hip spica followed by and op to brake her femur to re align it with a plate and pins followed by a further 8 weeks in the hip spica. Lucky for us the Consultant was on leave for 2 weeks so we had time to get our head around things other wise she would have been in within days! As you know it was a difficult time but I was amazed at how fantastic Sandi was through it all. So happy and content- apart from the weekly hair washing session!! Once the plaster was removed it was like having a newborn baby again who could not sit up- that was difficult to see. But she soon got her strength back and was walking in about 3 months making up for lost time ! At 2 and half she had the pins and plate removed from her leg which went very smoothly, out of hospital the same day and walking again in a few days ( took full advantage of the sympathy and pressies and being carried around every where!) she is now 3 and half and goes to nursery as normal running and jumping with all the other children. She still has one leg a little shorter than the other but it does not really affect her. She does not like to walk too far but not sure if that is just her being lazy! Though I do think she feels it in the cool more. When the snow came in January she did say it was aching more. We have another check up in July with X-rays and just have to wait and see. He says that if the socket has not developed enough by the age of 5 she may need further surgery to build up the socket with bone grafts. I try not to think that far although it is creeping up with her being 4 in October. The hip spica at 16 months was tough imagine at 5 years old! 🙁
Although not a nice experience for anyone I feel that we all have a very special relationship as she supported us as much as we cared for her with her beaming her beautiful smile at just the right time when mum and dad were just about to fall apart!
I hope all goes well with Erin’s X-rays and whatever happens you will all get through it with a happy healthy gorgeous little girl.
Good luck xx
Sian
South Wales
My 3 year old son was diagnosed with DDH at 2 years … he had been walking for a year. Clumsy falling over and a limp. I had taken him to drs at around 10 months with concerns of loud click and thump in my hand when I put him on my hip But was not referred until I went back at again with same concerns and unsteadiness. His right hip was totally dislocated and we were right in our thought that his one leg was longer than the other. How was he walking and running with this condition?. He had open reduction and was in spica cast for 8 weeks. We are monitored regularly and cannot complain of our treatment as it has been first class. It maybe that we will face another op next year and the associated stress for such a little one with such energy its nothing to look forward to. People think that the open reduction is the fix for our children when its only the start of their hips journey to catch up and develop. I am still learning about this condition and what it means for my son. For the families who have a little one with DDH my heart goes out to you … and I wish you the best.
Gosh Emma my heart breaks for you… Erin’s story really makes me realise how lucky I was with my daughter.. She was diagnosed with DDH at birth and after a bungled 3 months of not realising how bad it was, we were referred to Mr Wainwright in Oxford, who is a total life saver… Holly had a spica for 3 months and seems fine now.. Next check up in Aug. Wish you all the very best x
Thanks Stacey – It has been a long haul, hopefully all is done!
Hi Emma,
I was pointed in the direction of your blog by Sail Gray, she said that you met a few years ago, she said to say hi and you might remember her!
My daughter Amelie has been diagnosed with DDH. It was picked up at her 6 week check and I am very thankful for this, however it did take the hospital 3 weeks in order to get her an ultra sound scan. We were referred to Southampton and a pavlik harness was fitted this has failed and Amelie is due to have an operation to have a spica next month. One of my biggest worries is the hospital stay with such a young baby, Amelie will be 4 and a half months roughly when she goes in, she is such a happy baby and wasn’t happy in her harness as a nerve got trapped in her right leg, she also likes to sleep a lot and a noisy ward concerns me!
I hope Erins x rays are ok? I cant imagine what it has been like for you when you haven’t had the help to begin with from health professionals. The doctors at Southampton are good at the what they do but i do feel we lack a lot of information at this point, I’ve been in touch with the charity Steps but i don’t think it has quite sunk in what lies a head yet.
I wish you all the best
Kerry xx
So heartbreaking that your daughter wasn’t diagnosed sooner, my little girl got to 8 months before a new health visitor noticed one leg shorter & told eventually she had ddh. Never even heard of it before, despite the challenges of a spica baby she has thrived & nothing so far has bothered her! 4wks left out of 16 & I can’t wait to hold her and or her to feel me, my only issue is she has 16wks in a splint & I have no idea what that will be like! Weird thing is I’m now so used to the spica the idea of a change worries me! Good luck to you 🙂
Ki-Hara Resistance Stretching is hard to find, but might be able to help your girl’s hip. If this were my 2 year old, I would contact Carrie Collins at “StretchChi” in Chicago… She recently told me there is now one person in the UK trained in it, she can consult and help you find them. I am trained by Carrie, but I am in Los Angeles. Good Luck!
This annoys me so much that the signs were there, you were pointing them out and they ignored you! I am so glad to hear that Erin has made such great progress.
Thanks Joy – Erin’s legacy will be that I have educated others about late diagnosis if nothing else!
I was brought to tears reading yalls story ..im glad erin is doing well props to you mom for being persistent sad that this society we live in didnt listen to you to begin with. ..I myself was born with ddh may 1st 1987 was treated with a brace but with two pregnancies years of sports various wear n tear…I have varicose veins from thigh to my feet numbness and swollen ankles n feet almost every day if I stand up a certain wrong way or ways my leg gives out seems that my back catches its weird .. all this and more issues are not being treated due to no insurance . But hey that’s my life. .unfourtantly im hoping to b declared disabled not that its a bad thing its just hard to accept at 26 but I have heart and artery damage due to Kawasaki disease ….so anyway thank u for sharing your journey and best of luck
gosh, some very sad stories here, I came for a quick look as my niece has this but she was obviously very lucky as she was diagnosed at birth. She had to have one of those casts and has had a few operations, she’s not allowed to do too much sport but other than that, she’s fine for now. She may have to have another operation later on though (she’s 16 now)