Club foot and downs syndrome

[Shinning_Star]

I have just got off the phone to my mum and fund out my sister discovered her baby has club foot, I'm not sure if its both or one and the doctors have basically terrified her by saying it's linked ot downs syndrome. They've gone on and on at her to have an amniocentecis, thank god she managed to stay strong and told them why what difference would it make, she wouln't abort and she can prepare herself for the 'worst'.

I'm absolutely devastated my sister has to go through this, I'm pregnant too obvioulsy she's 21 weeks I think and has another scan in six weeks. I'm so upset for her, my whole family seem to have to go through every kinda of challenge you can imagine! I'm also and maybe I'm being slefish but am really worried my being pregnant will upset her more.

Anyway I don't even know why I'm posting to be honest, I guess to express my fear and concern for her and her hubby! I've looked into it and apparently it's not such a risk if it's one club foot, as in one club foot is far more common than one club foot and downs! Also there are tons of ways it can be helped and shouldn't affect the child's life at all really.

I don't really know what to do, whether to email her links I've found, offer suport or just leave her being as I'm pregnant as well and I don't want to make her feel bad. I'm completly lost and upset and really don't know what to do, she phoned my mum not me. So I'm taking as she doesn't want to talk to me just yet.

Anyway signing off for now.

 

[Hevz]

I replied on the other thread babe

 

[cuddles314]

Thinking of you and your sister.
xx

 

[Blob]

Did you see that program on about club foot!???? It really was amazing the guy worked in a 3rd world country (i have poop memory) but he put a cast on the leg when they were babies and you couldnt even tell the difference, when they were older. When it was on tv its not available on the NHS so i guess some looking around would be the thing to do hope everything else with her LO goes ok!!

 

[beancounter]

i replied on the other thread but i still feel kind of weird that an amniocentesis would be advised for a clubfoot (because I had one), I never really thought of it as a serious problem to be honest. I hope the rest of the pregnancy goes well for your sister and that's the only problem

 

[mrs shine]

Did you see that program on about club foot!???? It really was amazing the guy worked in a 3rd world country (i have poop memory) but he put a cast on the leg when they were babies and you couldnt even tell the difference, when they were older. When it was on tv its not available on the NHS so i guess some looking around would be the thing to do hope everything else with her LO goes ok!!

I saw this too, he was amazing.
The doctor spends half his time working for the NHS every month, and has managed to get some NHS trust to take up the procedure. I believe it is becoming more popular here as more parents are demanding a non surgical procedure for club foot.
I've just googled it, it's called the Ponseti Method.

Hope the rest of her pregnancy goes ok.

 

[enigma]

 

[Mickeyc]

Hi,

My daughter Sophie was born in August with talipes(club foot) on her right foot only. this was first seen at the 20 week scan.

She has been having treatment by the ponseti method. Her full leg was put into plaster cast when she was 10 days old and we had weekly visits to the hospital to have the casts changed.

after 4 weeks she had aa tenotomy which is a little procedure to cut the achilies tendon to release the foot. she was then in cast for another 3 weeks.

Her foot is now fully corrected, it is amazing what they do in such a short space of time. She now has to be in a special brace called 'boots on bar' which is basicly little buckle up boots attached to a bar, she looks like she is on a snowboard!! She has to wear this for 23 hours a day for 3 months, then at night only up to the age of 5. This is done to stop the foot from relapsing.

It has been hard, alot of the things you take for granted like bathing your new baby are impossible, and all her little sleepsuits have to have all the feet chopped off! but Sophie has been very adaptable and I'm just glad her treatment was started early.

I have found the charity 'steps' to be very useful they have a great website.

Feel free to ask me any questions!

 

[hivechild]

What a stressful time for your poor sister and the rest of your family. I think that just giving your support and letting her know you're there for her will be more than enough!

Maybe you can even get her posting here.

 

[MandaAnda]

Like Mickeyc's experience with her daughter, most children I ever looked after with talipes equinovarus were treated using the Ponseti method, etc. This was throughout my three years of training as a children's nurse, and while I do not work on a general paediatric ward, I'm pretty sure the treatment Mickeyc described is commonplace across the NHS, depending on the severity of the talipes.

 

[lozzy21]

Even if the baby dose have downs is not the end of the world. yes they will need more help amd suport but they can still go on to achive so much

 

[eswift]

My OH was born with a club foot years and years ago (he's 45 ish now) He was one of the 1st children who was manipulated rather than operated on. As he was born with the club foot it was something we discussed very early on due to his foot, manipulation and the time taken.

In his mind although it took years for the foot to be like a normal and he had to work had with the physio. He has no scars, he's had no problem since and in all honesty you wouldn't know that he's ever had a problem with his foot initially. Until he get really tired and then he starts limping slightly but don't we all???

So in our eyes if we were to have a child who had a club foot we would not choose the operation, we'd go down the manipulation route... OH had friends who had the op, they have had to have repeated ops and physio plus they have some nasty scars too...

Try to be there for your sister, I know it's going to be hard; but even just knowing that she can talk to you when something is going to upset/worry her, she can call you will help ease her stresses... I'm sure she'll really appreciate it... Good Luck!

 

[Seity]

I just wanted to say that I was born with a club foot and they fixed it with a cast when I was a baby. If my mom hadn't told me, I'd never have known that I was born that way. I ran track (hurdles) in high school. Did gymnastics into college and I play ice hockey currently (well, not at the moment because of the baby, but I will again after). I have never heard of a downs link to club foot.

 

[OskisMum]

I wasn't aware that clubfoot and downs were linked?

A very close friend of mine gave birth in February, she opted for the nuchal scan (as aopposed to nuchal test, as most of us will if given a choice) all came back fine, at her 20 week scan the baby had markers for downs, she was put under specialists and had more tests and scans done and was evenutually given the all clear. Unfortunately the specialists are not always right, minutes after giving birth she was told her son had downs.

She has coped really well with this and says that he is still her son and she doesn't love him any less (of course). If she has one regret it is that she spent so much time worrying through her pregnancy about the what if's, the what if's turned out to be quite bad but it would've been even worst if she was left with no child at all!

Next time round she will have the nuchal test so that she doesn't have to spend all of that time worrying again.

I sometimes wonder if it would be a better, less stressful world if we weren't armed with as much information as we are today. This is proof that information is not always correct and specialists can only give us information based on studies and not always facts.

I know it's hard but your sister needs to try and focus on a healthy pregnancy, having a baby is very stressful during labour and after. She needs all of the energy she has to get through the first few months without too much worry, I fear it's probably too late for this though

Some advice I have is to support her and encourage her positivity, please do not dwell or pity her. Tell her "so what if the baby has downs/a club foot, he/she will not be more perfect as you created them".

Hope this helps and my thoughts are with you, your sister and her family.

xxxxxx

 

[maybebaby3]

a girl at works baby had bad club feet but nothin else was wrong with him.

 

[LouiseClare]

Hiya. My little boy was born with bilateral talipies (in both feet). We found this out at our 20 week scan. We were also advised to have an amnio, fortunatley the results came back clear. Ben was born on 27th June, he had a pirani score of 5.5 out of 6. When he was 10 days old he was put into plaster from the top of this thigh to his toes, it was awful, the doctor twisted his feet before he put the plaster on, Ben screamed and I was sobbing, he wore the plaster for 5 weeks and then he had to wear the boots and bar for 23 hours per day. Ben is only 14 weeks old now so we still have a very long way to go. I'm not going to lie, it hasn't been easy, we've had numerous trips to the hospital with sores and blisters put the ponseti method is fantastic, the difference if unbelievable. We did have an issue a few weeks ago because Ben's boots kept falling off, so he didn't wear them for a couple of days as we had to make another appointment at the hospital so get some smaller boots, unfortunatley in that time Ben did relapse and had to be put back in plaster for two weeks.


Good luck to your sister, if she ever needs anyone to chat to just let me know.

 

[Pippin]

sorry your family has gone through it all. With a little treatment she'll get through it. You'll all be there for each other and see her through. As for your pregnancy don't feel like that. She'll give birth first which will make all the difference and she'll be over most of the worst of it by the time your little one arrives so she won't compare.

 

[Mickeyc]

Hiya. My little boy was born with bilateral talipies (in both feet). We found this out at our 20 week scan. We were also advised to have an amnio, fortunatley the results came back clear. Ben was born on 27th June, he had a pirani score of 5.5 out of 6. When he was 10 days old he was put into plaster from the top of this thigh to his toes, it was awful, the doctor twisted his feet before he put the plaster on, Ben screamed and I was sobbing, he wore the plaster for 5 weeks and then he had to wear the boots and bar for 23 hours per day. Ben is only 14 weeks old now so we still have a very long way to go. I'm not going to lie, it hasn't been easy, we've had numerous trips to the hospital with sores and blisters put the ponseti method is fantastic, the difference if unbelievable. We did have an issue a few weeks ago because Ben's boots kept falling off, so he didn't wear them for a couple of days as we had to make another appointment at the hospital so get some smaller boots, unfortunatley in that time Ben did relapse and had to be put back in plaster for two weeks.

I have attached a picture of Ben before we started the ponseti method and another one of him wearing the boots and bars.

Good luck to your sister, if she ever needs anyone to chat to just let me know.

Hi LouiseClare

Its great to hear of other people coping with the ponseti method. I must admit I was so shocked when they suggested this for Sophie, she too went into casts at 10 days and I found this so hard to deal with.

Sophie has been in her boots and bar for nearly a week now (she is nearly 9 weeks old) and is coping great. she did not sleep at all the first night after they were fitted but she has gone straight back into her old routine of sleeping through the night. She is quite happy to go back into the boots each day after her hour out. she is a very adaptable baby!

Like you say there is a long way to go and it is hard at times, the numerous trips to the hospital have made my maternity leave very different to how I imagined it!

Ben looks gorgeous in his boots, I'm glad he is doing well, it is so amazing what they can do in such a short space of time isnt it?

Good luck with everything

 

[pimplebum]

hi all my son was born with club foot [only on his right side] there are no other problems he has just had his 5th cast put on.... his foot already looks much better ... he has just been measured for his boots and bar hes got to have one more cast put on next week then he should be ready for his boots .....it is a worring time but when its your child you just seem to cope when you need to the thing i miss most is not being able to sit my baby in the bath but you just know that you are doing the best for your baby.......good luck to your sis i know its hard but just try to tell her to enjoy the rest of her pregnacy

 

[honeygrl]

You could always talk to her and tell her that you will be there anytime she needs to talk and will support her in any possible way you can. After that leave it up to her if she wants to talk or ask for prayers or whatever she feels she needs most right now. That's really the most anyone can do for her at this point I think.. just be there and understand she's going through a rough time and tell her it's going to be OK no matter what.