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 firstname.lastname@example.org
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
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