Our story of DDH

1. Our story of DDH By Emma Bradley www.emmaand3.com

2. Erin Rose, 24 weeks spent in spica. Six trips to theatre.

3. Pregnancy • Third pregnancy. Two full term babies one girl born 2000 and one boy born 2004. Both normal deliveries, one induced labour and one spontaneous. • Gestational diabetes, large baby expected. Regular scans, carefully monitored. Induced labour at 38 weeks. • Normal delivery, girl born weighing 8.13 therefore less than actually expected.

4. New born checks • Erin was checked in hospital and nothing of concern was detected. • We were discharged 18 hours after birth. • During her midwife home visits there was concern as Erin was not feeding and lost too much weight. After breastfeeding the older two I was upset not to be able to breastfeed Erin. She had reflux. I was shown swaddling as a way to settle her. Erin was actually a very content baby.

5. Developmental milestones • Erin slotted into family life so easily. She was the easiest of the three. She slept so well and was a quiet baby. • However she was very late with all her mobility milestones. • At nine months she was still not crawling although she could sit independently.

6. Nine month check • This actually took place when Erin was 11 months. Erin was still not moving about. • The health visitor had a trainee with her and they both carried out Erin’s assessment. Her mobility (or lack of) was discussed. • Erin had asymmetrical creases and was not moving independently. Both of these are symptoms of DDH. DDH was even mentioned at the appt as it was explained to the trainee. • I was told Erin would be monitored. Erin should have been sent for an xray.

7. The follow up’s • Erin was in the GP’s surgery frequently as she has asthma and repeated ear perforations. Yet her mobility was never seen as a concern, I was always dismissed. • I was told it was due to Erin being large and heavy. • Every time we went to the surgery I raised concerns. I was told she was still within normal ranges. Her creases were observed but nothing more was said. • I had a few phonecalls from the health visitor who was more concerned about Erin’s lack of speech. I was told at 15 months that Erin would have her 2 yr check at 18 months. It never happened.

8. Pre diagnosis At 22 months Erin took her first steps and it was clear something was very wrong. Her right foot turned inwards and she waddled. I rushed back to the GP’s where once again her hips were checked. We were referred for physio. The physio watched Erin playing and deduced nothing was wrong. As we left the appointment I was called back into the room because as Erin waddled out she realised something was seriously wrong. This was one of the lowest points. Erin’s medical notes from this time are confusing and do not show joined up thinking. She was being referred to different depts by different people. I just wanted someone to talk to me.

9. Diagnosis • We went back to the GP again, this time I was in tears. The same GP decided that Erin needed to be seen by a pead. • Whilst waiting we were referred to orthotics by the physio. This was to rectify the problem by having shoes made. Still no diagnosis or cause identified. • The pead appointment. As Erin played in the waiting room the pead consultant came out of his office to meet us. As I walked Erin to the room, I could see him studying Erin and for the first time I dared to hope for answers. He asked a few questions before telling me he believed Erin had a hip problem and that it would require urgent, imminent treatment. He sent us for an xray and told me he would call me the following morning with the results.

10. The phone call • After a long morning, I took the call from the pead who listened to me as I slid to the floor in tears. I had known since the day before. But during those hours I had googled and I had learnt a little. • An appointment with the surgeon followed and the outcome was even bleaker. I had thought Erin would need six weeks in spica. • Our amazing surgeon (who has always be honest with me) outlined that Erin’s hip was totally dislocated, her socket flat and femur head under developed. Erin would need 18 weeks in spica, followed by a 6 week break, then major pelvic surgery followed by more spica. All in all we were looking at six months of casting and surgeries.

11. Erin on youtube • This is before I really knew what life in spica would be like. • This shows the pre op gait. • http://www.youtube.com/watch?v=f79VCBVDqwU

12. Closed Reduction and spica • Erin had her first closed reduction and spica cast two weeks before her second birthday. • She woke up confused and scared. • Everything was a challenge. New baby equipment was needed. I had an OT suggesting we moved her bedroom downstairs. There was talk of hoists. • We didn’t know how to hold Erin, to comfort her. It was simply scary. The nurses had little advice to give with the nurse telling me she had never looked after a child in Spica before. • Nappy changing was challenging and I was very aware of spoiling the cast.

13. Life in spica • http://www.youtube.com/watch?v=01Gu4XisQMk • Is very hard. It is expensive, isolating and difficult. We needed new arrangements for everything. • We needed new pushchairs, carseat, eating, washing and playing arrangements. • I had to take nine months off work, unpaid. I was only able to give my headteacher two weeks notice. I feared losing my job. • Erin was not able to go to nursery as she needed too much care. Nursery offered to provide a few hours each week but we could no longer afford the fees.

14. Life in Spica • Erin required surgery every six weeks to have the cast changed. • The disruption to family life was immense. • No holidays as places couldn’t accommodate Erin. • I blogged throughout the experience and looking back at my posts shows real depths of feelings. I would love to write a book. • However the reality was that not every day was easy, they were many days of tears – mostly mine, there were sleepless nights, there were cramps, there was frustration and boredom, there was lack of money and a lack of routine.

15. Blog quotes • Some days were so full on, tired from a bad night, yet you need to entertain the child that cannot walk, the child that cannot choose and carry their own toy.  The child that cannot be left with a drink incase they spill it down their damned spica cast.  Likewise with dinner, you can’t risk food getting where it shouldn’t and causing a reaction or infection. •  I wasn’t there on my sons 8th birthday, instead I had to be on a hospital ward at 7.30 am for another cast change. •  I wanted to remain hopeful, Erin was brave so I needed to be to.  However the reality was that not every day was easy, they were many days of tears – mostly mine, there were sleepless nights, there were cramps, there was frustration and boredom, there was lack of money and a lack of routine.

16. Removal • http://www.youtube.com/watch?v=TrRWaG8__P4 • This was my lowest point as a mum. I never realised just how weak Erin would be after 18 weeks in spica. I had images of taking her swimming, getting her in the bath. In reality the clip shows how tough it was. When I think back I described her movement as a broken frog. • Yet the reality was we still had major surgery to face. Pelvic osteotomy was six weeks away.

17. Salters Osteotomy

18. Major surgery • The Salters was a big operation and took around four hours. It involved cutting her pelvis, angling in and pinning the femur into place. • Erin was very poorly after such a long operation. She developed a chest infection and both ear drums perforated. • She was on very strong pain meds. We were expected to be in hospital three nights but stayed for five. Unfortunately Erin then developed an upset tummy due to all the meds and had a blow out in the cast. • This was a real set back and Erin was readmitted to hospital and needed to go back to surgery due to the risk of infection in her wound.

19. Where we are now • We finally got rid of the spica and were able to pick up our lives. DDH affects our whole family – all the time. My older two have cried and been scared for their little sister. I have yet to tell them that due to the genetic link their own children maybe at a greater risk. • Erin is scared. A recent trip to AE with asthma leaves her petrified that the oxygen mask is going to force her to sleep. • She cried and tried to hide from her flu jab. • A physio appointment made her cower in the corner whilst I held her with tears streaming down my own face.

20. I asked other mums what they wanted me to tell you! • Addien was 21 months old before she walked and we were fobbed off with 'she's one of triplets', 'she was prem'... When she did start she was walking with a waddle and it still took over a year to get her referred to ortho •  but its even harder having them diagnosed later on when you as a mother knew that something wasnt right all along and could of been found and corrected alot sooner and alotyounger • Sian dragged her left leg when she started crawling, we thought it was cute and didn't have a clue this was a symptom of ddh, it would be helpful to make parents aware of symptoms to look out for.

21. The future • http://www.youtube.com/watch?v=wzAjaeRrXIc • The future is somewhat unknown. Erin walks, runs and plays like her peers. But look closely and she has a different gait. Look closer still and you will notice that her joints are much weaker. • Erin has benign hypermobility syndrome. She feels the cold and complains of pain. She is looked after by both her surgeon and a rheumatologist. • She has six monthly check ups which she will require throughout her childhood. • DDH leaves a nasty legacy.

22. More Info • Steps Charity – they are awesome. • The IDHI the governing body, they find the answers! • My blog www.emmaand3.com