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(18 Posts)
kazza3 Tue 08-Feb-05 20:30:01

Is anyone going to b watching this program on BBC1 at 9pm tonight sure to be a tear jerker and also make you think !!!!!

piffle Tue 08-Feb-05 20:48:42

I am watching it as my dd has a condition due to her genetic syndrome that gives her droopy eyelids.
We have been offfered a surgical fix for this if it impairs her sight (it doesn't)or we consider it too disfiguring (we do not) plus she is 2 and tiny and I don't want to make that decision as it is hers to make in my opinion
I want to see how the kids feel - to see if I am right to wait or whether I should deal with it earlier...

titchy Wed 09-Feb-05 10:54:37


My dd had the same condition with her eyes and had the op last summer aged 4. She is so much different in her entire outlook now. Physically a lot more confident and cna run without falling over (the head back position is not good for their gross mototr skills imo). Plus she tells me she can see so much better. Her actual eyesight wasn't affected either but her field of vision was restricted. She has become a much more confident child as a result.
We waited until she was bigger to have the op, but wanted it done befroe she started school. Although having said that very few of her little friends have actually noticed!
What syndrome does your dd have out of interest?
If you want to know more about the op. then feel free to post!

NameChangingMancMidlander Wed 09-Feb-05 10:57:08

I wanted to watch this but DH couldn't. He is terrible when it comes to ill or upset children, he has to turn over as it really gets to him.

I have to say that the bit in the trailer for it where the father was in tears saying that the operation would make his DD 'acceptable' (in the eyes of society) was harrowing

Blu Wed 09-Feb-05 12:03:40

I found this completely wrenching.
I have had to see my little one have repeated surgery before the age of one, and the idea that these parents were feeling that they needed to do it not for any health reasons but, as one dad said 'to make her acceptable' made me sick sick sick.
It was a terrible indictment of us as human beings - that these gorgeous, delightful children were going through operations and wearing an external fixator frame on their faces simply because people cannot treat them as equals or without staring or comment or causein 'psycho-social issues' as the U.S Drs called it.
Actually, I felt quite unbalanced about it this morning - and it made me realise why I am SO 'zero tolerance' on any form of discriminatory language etc.
Felt very pleased for hayley when Mark Warner gave her a job in Greece - yay!

Poshpaws Wed 09-Feb-05 12:05:12

I missed this as I was out.

Did these children all have the same condition?

Really wanted to see this programme

Blu Wed 09-Feb-05 12:05:38

Jjust to be clear: I'm not blaming the parents - not at all. But i did wonder about the little American boy - his Mum said she thought he had the personality to cope - and she was so disturbed when her little boy just didn't look like himself anymore.

Blu Wed 09-Feb-05 12:08:09

yes, they had a syndrome (Aperts?) which causes a different bone structure in the skull. Sometimes it can constrict the brain, so obviously then surgery is needed for those reasons, too.
They also had small hands and feet with fingers / toes fused or 'webbed'.
Typically, the forehead seemed v high and protruding, squashing down the nose and brow.

pixel Wed 09-Feb-05 12:22:31

They did say that the little girl Honey would have to have the operation as there was no room for her brain to grow, so it wasn't always just for cosmetic reasons.

I thought Hayley was wonderful. So brave and determined to get the most out of life. I hope that doesn't sound patronising but I don't mean brave necessarily because of her condition, but by normal standards. I would never have the nerve to apply for a job abroad and go off by myself now, let alone when I was nineteen. And she had so much more to overcome, having so many operations (her choice but still painful and scary).

piffle Wed 09-Feb-05 14:51:08

titchy am desp to know more about it
dd has noonan syndrome, one yelid was really bad but cranial osteopathy evened it out, there is a slight restriction on her field of vision and the only reason we opted out of surgery was that at age 2 it is so young to be worrying about a cosmetic image.
But last night made me think twice, perhaps it would be easier now?
Could you pls let me know what the procedure entails and recovery times etc... dd is a dream when ill, just cuddles and sleeps so am sure she would be ok as a patient.
I want to make sure I do it for the right reasons, whatever they are...

Bumblelion Wed 09-Feb-05 14:59:17

I saw this and thought it was brilliant to watch, although a bit sad. My daughter also looks a bit "different" and I hate that us as parents feel we have to conform to a certain way of looking. My youngest DD is blonde, blue eyed and very beautiful (to me) (although she has down-slanting eyes, a pointed chin, overcrowded teeth, pronated ankles).

What a situation to be in where you are in a position to have to consider surgery to look what is considered to be "normal".

When they thought my DD had Synostotis I went to GOSH to the cranio-facial department.

I felt that if she had to have surgery (because of fused bones that would restrict brain growth) then that is something we would have to deal with (luckily she doesn't have that) so we are not in a position to have to consider surgery.

My eldest DD came and sat with me and watched the programme (she is 12). She saw me getting a bit upset watching it (I felt everyone that took part was so brave and I thought Honey was so beautiful) but turned round to me and said "it is good in a way that S has Sotos Syndrome, otherwise she wouldn't be the character she is".

Bumblelion Wed 09-Feb-05 15:02:47

I don't seem to have finished quite what I was saying - lost track a bit.

I think we all (me included) sometimes are not aware of what other people are going through. I don't mean this in a patronising way, but sometimes it is only by knowing that others are going through the same/worse that gives me the strength to carry on.

Sometimes I feel sad about my DD condition, but at the end of the day just want everyone who meets her to accept her for the person that she is. Forget that she is a bit "behind", rather tall for her age, has large feet, etc. - see the little personality that is hidden behind the physical features.

I would hate that someone (another child) would not get to know my DD because she is "different". I am trying my hardest to teach the other two of my children that we are all special in some way and we shouldn't discriminate (my favourite word at the moment) on race, size, religion.

It is the difference in all of us that makes each of us unique.

sparklymieow Wed 09-Feb-05 15:54:44

The little boy who had the frame attached to his face made me cry. I felt so sorry for him, and I thought he was lovely before. I said to Dh that I couldn't put my child through such a brutal operation. And it wasn't for medical reasons IMO, though its not a cosmetic op either.

kazza3 Wed 09-Feb-05 20:11:24

A couple of years ago it hit the news that some parents of Downs children were letting their children have plastic surgery so their features wouldn't be so prominent.

rickman Wed 09-Feb-05 20:15:47

Message withdrawn

onlyjoking9329 Wed 09-Feb-05 20:37:56

i watchedit , i worked with a little girl with aperts syndrome, she had lots of surgery, i know how much people used to stare at her wherever we went, i thought all the kids on the programme were great just a shame they are not accepted as they are.

titchy Thu 10-Feb-05 11:12:14


She went into hospital for one day. We had to get there at 10.00 (god knows why - we didn't do anything except wait - well we waited, dd ran around with another little girl like lunatics!). Her op was in the afternoon so she had breakfast, then nothing just sips of water. She went to the theatre about 2.00 and I held her while she had the anaesthetic (she just had an injection in her hand, but many anaesthetists use a mask). Then I had to leave (obviously sobbing as I did so!). dh and I went to the coffee shop over the road and had 2 cappacinos and 40 fags each (nearly!). The op took about half an hour, but it took dd about the same length of time to come round from the anaesthetic. Once she had come round I went into the recovery room to hold her hand. She was still very woozy though.

Her eyes were completely open and filled with gel to stop them drying out. They used a synthetic material to hook up her eyelid muscles to her eyebrow muscles. The 'string' went behind her eyelids, so all you could see was where they had stitched it to the eyelid muscles - three bits of string were used for each eye so she had 3 stitches above each eye. She cried for about half an hour then dropped off tosleep for an hour or so (I think all children who have an anaesthetic are encouraged to sleep as this helps them get over it enormously). Once she woke up she was happy, hungry (scoffed a plate of chicken nuggets and chips!) and very alert. In fact she was completely back tonormal - it was astonishing actually. her eyes were still blurry with all the cream but that came out overnight.

For a week or so afterwards she could not close her eyes, even to sleep which was very wierd, due to the swelling. She had to have artificial tears and antibiotic eyedrops 4 times a day each for 2 weeks whihc she hated. But it was well worth it imo. She didn't seem to feel particularly sore although her (disolvable) stitches itched for a day or two.

We were told to keep her off nursery for 2 -3 weeks, but to be honest she would have been fine going back the next day, although with the eyedrop routine we didn't feel we should - but physically she was more than able to.

If you have any questions please feel free to post or CAT.

titchy Thu 10-Feb-05 11:16:01

One othe rthing to add - our surgeon told us that this would probably not be a permanent fix as the artificail stuff does not stretch too well as they grow. So when she is about 8 she may have to have the op. again, but to make it permanent they will use tissue from her leg instead of artificial string as this will grow with her. Most children are tall enough for them to use this from 4 or 5, but both my kids are very short - as am I!!!!! (Hence my nickname). So depending on your dd's height you may want to wait until she is 4 so her leg tissue can be used, then she wouldn't have to have it done again.


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