Downing Street Petition regarding Newborn and 6-8 week hip Checks

[pinkoona]

I am mum to Siomha born 26/1/2007 - At 14 months she was diagnosed with a dislocated hip (Developmental Dysplasia of the hip) and her hip socket had not formed at the dislocation had been from birth. She was operated on in Great Ormond Street for 7 hours last September. Her surgeon created a new socket from her pelvis.

Please sign a non political petition which is encouraging the Department of Health to meet with late diagnosed parents so ensure what happened to Siomha is rare.

petitions.number10.gov.uk/NewbornHips

Thanks Oonagh

siomha-has-ddh.blogspot.com/
I will also post further later as a lot of the problems stem from lack of parent information.

Hi Oonagh

Ladies, as most of you know, my dd was also born with DDH. Hers was diagnosed at 2 days old, and because I made such a fuss about it, she was seen at 2 weeks old. She was treated with a Pavlik Harness, which she wore for 13 weeks and she did not require any surgical intervention.

We were very, very lucky, and it is the only time my hysterical nature has worked to our advantage. Of course, this shouldn't need to be the case.

My dd is 2.2yo now and is fine although she will require checkups until she is 5yo.

Please sign.

Thanks Jenny

We have been up to the Houses of Parliaments with a Early Day Motion

edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=37901&SESSION=899

and have pushing and pushing for media coverage. This condition is not necessarily hereditary and can come about through breech positioning.

I am absolutely delighted that your daughters hip was detected and as importantly TREATED early - as this is key.

Please, please sign. It takes about a minute

Many thanks Oonagh

news.bbc.co.uk/1/hi/health/7893294.stm

news.bbc.co.uk/1/hi/england/some rset/8047730.stm

news.bbc.co.uk/1/hi/health/7926696.stm

Hi Oonagh,

I've just signed and wanted to thank you for all your hard work and to send hugs to you and Siohma for all you've been/are going through. My LO is currently in a pavlik harness for this condition. She was given a routine scan at 6 weeks after birth as she was in breech position and the problem was picked up then (the harness didn't go on until 14 weeks but that's because the condition initially seemed to be improving by itself). Routine scans at 6 weeks for breech position babies seem to be policy where I live (Glasgow), although it would have been even better had there been screening at birth. We don't know yet if the harness is working - we have our first scan since it went on tomorrow. I'm a bit nervous as you can maybe imagine.

PinkJenny - thanks so much for all your support when our harness first went on 4 weeks ago. As you predicted, both LO and I have now got used to it with no real problems apart from having to be more careful about winding. We take our girl for a bath at the hospital once a week and it now seems strange to see her without the harness.

DrCosy - no problems, please let me know you get on. I remember when dd came out of her harness, she felt all wobbly and fragile!

I remember taking a little white dress and a pair of frilly socks to change her into. Bless her, it was so strange to see her with bare legs

That's great news that your DD has adjusted well, DrCosy. Good luck withthe scan tomorrow.

PinkOoona - sorry to hear about you and your DD. My DD also had DDH, but it was picked up at birth, and she spent a spell in a Pavlik. We hope that this has resolved it, but like PinkJenny's daughter, she has to have scans yearly until she is 5.

I've signed the petition.

Dr Cosy

try not to worry too much - 95% success rate with the harness.

We have so many problems that is sometimes over whelms me.

....this is one of the best examples of what we are all about..........

I wanted to share with you part of a story ? I have been contacted by a growing number of parents with treatment delay stories and one in particular stunned me. A lady who, though not active on the forum, often reads other stories and advice.

She gave birth to twins in November 2006 under Bedford PCT. One twin was breech and was given a scan and the other wasn?t as not their policy ? you probably know where I am going. The unscanned twin had a number of different hv checks/gps visits as things did not seem quite right eventually just before her first birthday she was finally xrayed and DDH was confirmed. Since then this brave little baby has has been in traction, closed reduction (failed) ? had a Pelvic Osteotomy in April (all these are under general with a cast from chest to ankle)and her parents anxiously await results from next check-up in August.

If these twins had been under the care of Milton Keynes PCT (WHICH IS NEXT DOOR literally!)

then guess what their policy was?????.

NB: In the case of multiple births, if one is a breech presentation then others should be referred too.

www.mkhospital.nhs.uk/uploads/documents/298_guidelines_on_developmental_dysplasia_of_hips .pdf

I don't sleep much because there is so much to fix.

Thank you so, so much for signing

Oonagh

x

Oonagh - just wanted to pick your brains... I am pg with number 2, and although I am pretty sure that dd's DDH was positional, is it likely that I will have to beat my drum once again to ensure a timely scan for the new baby?

Oonagh, another early detection success story here - will sign. Hope you and dd continue to do well. Dr cosy- glad to hear your dd got used to the harness, good luck with the scan. Pinkjenny - dd1 had a follow up x-ray when i was pregnant, our fab consultant said to talk to the midwife, make sure they were aware and that they should ensure a scan for dc2 but if it hadn't happened within 6 weeks to call him direct and he'd sort it. He was great. Unfortunately, we moved so i still had to throw my weight around'

Robino - thanks. Dd has only just had an x-ray, doesn't have another scheduled until the new baby will be 6 months old. I might speak to the consultant about it, and possibily just before my due date, start hassling Alder Hey.

They love me there

Pinkjenny

2 greatest risk factors family history (not just first generation or sibling) and positional i.e. breech (irrespective of whether delivered x-section)

You must (and are entitled to) a USS - The existing guidelines are that the absolute correct timing for the first scan is 4 weeks (I believe that this is being revised to 3 weeks). We are pushing that is there is family history of ddh why do you have to give birth before you book the scan - this would avoid any delays.

Any other questions - please let me know.

Regards
Oonagh

Thanks Oonagh

We don't have any family history. I think I will contact Alder Hey myself closer to my due date. They know how neurotic I am about the hips, and I will do all I can to ensure that dc2 has a scan as soon after their birth as is humanly possible.

Jenny - yes you can pull the family card out officially as a sibling having this condition now puts you in the higher risk category BUT please don't worry just kick up a stink to get the scan done. I have just been asked to do an interview with Woman's hour and will post if it comes off

Cheers Oonagh

Oonagh - duh! I am so thick!

Definitely post the interview.

Hi all,

Well yesterday was a bit of an anti climax as they couldn't get a clear picture on the ultrasound scan as apparently at 4 months our LO is now too big for this to be effective. We were back today for an x ray which shows that while the hip hasn't got worse it hasn't really improved either. We're still keeping the harness on - just have to wait and see what things are like in another 4 weeks. Ho hum. Am trying not to worry too much, although I'm now starting to think the harness should have gone on a lot earlier than it did.

Pinkjenny - congratulations on being pregnant again, that's great news. And grrrr, push for that scan!

Dear Dr Cosy

Sorry you did not get the all clear yet - Fingers crossed you will get a more positive result in 4 weeks. Try not to worry too much.

I am not doing the Woman's Hour interview but have another mother doing it. (I am on the Isle of Wight for an extended holiday and BBC do not have a studio here) BUT my daughters Surgeon and STEPS charity will be talking about the problems we are trying to fix.

BBC 4 next Wednesday between 10 and 11am -They cover 4 items so I don't know exact timing but I will also post the link for the podcast after

Cheers Oonagh

I will happily sign the petition. My cousin was not diagnosed until she was 2 years old, and had repeated (unsuccesful) surgeries as a child.

She has had to have hip replacements in her early 30s, and will need it doing again in the future.

I am very sad to see that 30 years later parents are still having to go through this with their children.

I have signed - good luck in raising awareness for this issue Oonagh!

Dear Jas

Thanks -one of the other mums in my daughter's school is daughter to Michael Bond (creator of Paddington Bear) She had hip replacement at 49 (last year) and is for the first time pain free (she spent 8 years in hospital from a baby). She has been helping us as she is shocked at how little has improved in detection (she has had 2 children with this condition and with her first they did not scan siblings)

In fact in many European countries they scan all babies by ultrasound citing the failure of the UK screening programme.

sincere thanks
Oonagh

One of the mums/babies who joined us at the Houses of Parliament is in the Daily Mail today

petitions.number10.gov.uk/NewbornHips/

sorry wrong link

www.dailymail.co.uk/health/article-1201673/Pictured-First-steps-girl-1-spent-months-b ody-cast.html