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how do I come to terms with birth defect?

(18 Posts)
herbaceous Tue 18-Aug-09 18:28:55

Hello all

My first, and probably only, baby was born nearly six weeks ago and I love him to distraction. We noticed when he was about a week old that he had a strange milky cast in one of his pupils. After lots of tests, it has been revealed that he is blind in that eye, thanks to a very rare developmental problem in the womb. That eye will also always be smaller than the other one.

While I've been reassured that it won't affect his life very much, and that the other eye will compensate, I can't seem to get over my sadness that he's not 'perfect', or that he might suffer. Looking down at his little face, with its one funny eye, breaks my heart. I feel angry that it should happen to us, and guilty. And a bit bitter - I had five miscarriages before getting pregnant with him, and feel it's my turn for some better luck.

Some people say I'm lucky it isn't anything worse, which I suppose I am, but they're the ones with 'perfect' babies.

I know I'll get over it eventually, and within plenty of time to help him just treat it as a fact of life, but was just wondering if anyone had a similar experience, and how they came to terms with it?

TheProfiteroleThief Tue 18-Aug-09 18:34:37

I think you are supposed to give yourself time to be sad at what you have not got, so you have time to appreciate what you do have iyswim. And of course you have concerns fwiw - my sister is blind in one eye and it has never really affected her - she drives and everything quite happily.

I would also try to give yourself some slack - 6 weeks is early days for anyone to be a mum to any baby - your hormones are probably only just starting to settle a bit and they make you crazy.

Anyhow, congratulations.

Greatfun Tue 18-Aug-09 20:35:42

I think your feelings are totally understandable and normal. We all want our kids to be 'normal' so they will be accepted and be the same as everyone else. It makes sense to feel this way as its all about wanting the best for your child. You have the added emotional pressure by having had so many sad losses before so all the more understandable. Sounds as though he will be fine as the other poster demonstrated. No one is perfect and its our little differences that make us all the more interesting. Enjoy your gorgeous little boy. He will be running around before you know it and you'll be wondering what you were worried about.

smackapacka Tue 18-Aug-09 20:41:16

Congratulations on your baby. Don't be hard on yourself about your feelings at this stage.

Remember that the current Prime Minister has made it to the top with only one eye! (You might not be a fan of Gordon Brown, but his eyesight hasn't hindered him in any way!)

Ivarsmum Tue 18-Aug-09 20:48:19

Human brain is remarkable for its ability to adapt and to compensate, so your baby will develop as well as any other, it will not hinder him in any way. I can understand that the problem can seem huge at the moment, but there is absolutely nothing to feel guilty about, this is just a play of fate. Lots of love and happy thoughts from his mummy is what your baby truly needs just now and always. Be strong and enjoy this special time when he is so young and cuddly smile

used2bthin Tue 18-Aug-09 20:48:45

My DD was born with a condition that affects her medically and physically. All I can say is it is a gradual process. It comes and goes too when she was little some days I thought it was fine and was very positive but others I would feel dreadful.

Also I used to hate people telling me I was lucky it wasn't worse! Ok for us to say it ourselves but not what others should be saying, well meant as it often is.

rasputin Tue 18-Aug-09 20:58:32

Message withdrawn at poster's request.

curiositykilled Tue 18-Aug-09 22:15:42

herbaceous - Six weeks is supposed to be the height of the baby blues, this is probably making it feel worse.

What rasputin says is the truth but don't feel bad for feeling like this.


herbaceous Wed 19-Aug-09 13:39:06

Thanks all

DS gave me the biggest gummiest smiles for the first time today, so I'm even more in love with him than before. And I know that me and his dad loving him is the most important thing.

TheDMshouldbeRivened Wed 19-Aug-09 13:56:18

congratulations. It does take a while to 'et go' of the fanatsy baby we all imagine. Took me nearly 3 years grieving for the baby I should of had even though I did love the one I ended up with.

AspasiaManos Wed 19-Aug-09 14:04:36

Awww, herbaceous - congratulations! Your ds sounds like a little sweetheart. I'm sure with parents like you and his dad that everything will go fine for him.

Macforme Fri 28-Aug-09 00:27:03

First, congratulations on your son Enjoy being his Mum

But, is ok to feel 'hard done by' for want of a better term.. it's ok to feel a little sad that he has a challenge to overcome... that's human nature and life should be fair but isn't!
But he WILL be ok and so will you...

I have a son with disabilities (and 3 other siblings) and I can honestly say it has made our lives soooo much better..

waitingforfanjo Fri 28-Aug-09 01:34:42

Hi, I was born with only one hand because my mum caught Rubella in early pregnancy. This was 1967, so no scans and like you, it came as a complete shock to them when I was born.

From what my mum told me about how she felt, I think it's perfectly normal feel as you do, and it will get better in time. She felt guilty, even though it wasn't her fault. She too hated being told it could have been worse (the majority of babies affected by rubella are deaf, blind or brain damaged) and she worried terribly how I would manage in life. She wished it had been my foot missing rather than my hand because she thought I would be able to 'hide' it better.

She says she got really angry with people who sent her 'new baby' cards with pictures of babies with their hands showing, she thought it was terribly insensitive at the time, but later she realised that it had simply not occurred to them.

From my point of view, I've always managed fine. Because it's been from birth I've never known any different. Children are remarkably adaptable. I went to mainstream school & was never bullied, I always had friends and in my teens I did absailing, caving,& mountain climbing and learnt to drive. And I never, ever felt my mum was to blame in any way.
Of course your son will be fine and you will eventually come to terms with it.I'm not saying you'll ever stop worrying about it completely, because I think most mums worry about their kids all their life!

The important thing now is to allow yourself to feel the things you do, and accept that it's OK because it is a bit like a grieving process. You have to go through this bit to come out the other side. And six weeks is so early. Being told it could have been worse is like saying your feelings aren't valid, and they are.

difficultdecision Fri 28-Aug-09 18:04:23

I've posted about this before but I think it's lovely.

It's written about a child with disabilities but I think it's relevant for all those times in our lives when things don't work out quite as we expected.

Welcome to Holland

Dogshitsonthedailymail Fri 28-Aug-09 18:09:40

Message withdrawn

Morloth Fri 28-Aug-09 20:24:11

This is hard. My DS was born with quite severe talipes of his left foot. What I found helpful was looking up all of the "successful" people in the world with the same condition.

In our case the talipes has been corrected, but his foot does look slighty off and his calf muscle will always be smaller than the other.

You just have to work through all the guilt and sadness - I used to cry at bathtimes because he had a cast on his leg for around 6 months that needed to be kept dry. He will be fine though, kids can compensate in astonishing ways.

gremlindolphin Fri 28-Aug-09 22:16:02

Hi Herb, my dd who is now 5 was born with a cataract in one eye which is also not a properly developed eye. She had the cataract removed at 6 weeks old and we had to patch her good eye for a while and put a contact lens in her poorly eye until she was 3.

She will never see properly in that eye but she has some peripheral vision, she says that it is spotty. You would never notice and as others have said, she has never known anything different so just gets on with it. She is a normal adventurous 5 year old and loves school.

We had the full Great Ormond Street experience which put a different perspective on it ie when I saw what some other children and families were going through it put it in perspective. I too felt horribly quilty and at the the time you are now ie 6 weeks found it all very hard so all I can say is that it will be okay!


2shoes Fri 28-Aug-09 22:22:34

herbaceous congratulations on your baby.
don't beat your self up, you have had a shock and are probally still comming to terms with things that are different from what you imagined.
my expierence was different, but I do remember grieving for the baby I thought I was going to have, found out years later that is normal.
(sorry Only read op)

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