Turner's Syndrome or Downs Syndrome

[kit10grl]

We have been told that our pink bump may be born with one of these syndromes. I know there was a post recently about how its upsetting that people are worried about there children having downs as if its the worst thing in the world and i want to make it clear that that is not my intention here. (

We were also told baby has a heart problem and will need surgery at birth, a week of worrying if she'll live was far more concerning to me.)

However if our princess is born with one of these i would really like to be prepared for how that will change our lives. I suffered severly from PND with my LO and at the centre of it was me feeling like an inadequte mum who couldnt relate to my baby and didnt know how to look after him. I am slowly recovering and am learning how to make him happy but still often doubt the quality of life i am giving him with me as a mother.

I worry about my ability to cope with a child who will have extra needs on top of those of an average baby. I want to help my baby get the most from life by preparing for anything that may come along so am looking for pointers on good info sites or forums for either situation.

Also any real life stories of how life is on a day to day basis with a baby/child living with them would be appreciated. As i said i'm terrified of my child having these issues but because i worry about me being good enough for them not becasue i feel there is anything 'wrong' with them.

I really hope im explaining myself well enough here i really dont want to offend anyone

 

[BabyBoo36]

I don't have any practical advice on Downs or Turners (sorry) to offer, but I do know what it's like to have a newborn who has to have surgery, and who may have special needs. Freya underwent fairly major spinal surgery (she has a rare form of spina bifida) at 12 weeks, and had also been sedated for an MRI scan at 8 weeks.

Worrying about taking care of a child with additional needs is totally normal in these circumstances. We found out about Freya's SB at our 20 week scan, and I swung between total despair and worry as to how I'd cope, and complete optimism that we'd manage fine for weeks. It sounds a cliche, but in the end, you just do manage. Pregnancy, for me, was the worst time, as it was filled with "wait and see" - wait and see how bad she is, wait and see when she'll need surgery......it's hard. I can tell from your post that you just want the best possible for your little girl, and that alone makes you a fab mummy.

My DH, mum and health visitor kept a close eye on me after Freya's birth, as due to the stress, they'd been warned I was a prime candidate for PND. Surprisingly, I didn't suffer with it, although I did have a period a month or so ago where I did get very tearful and a bit "down". I think that it was a case of once the initial flurry of birth, surgery and hospital appointments were over, and life calmed down, it hit me how much we've gone through since last Jan, and coupled with some family drama and my return to work, it all got a bit much. So that's maybe something for you to watch for.

Big hugs x

 

[kit10grl]

Thank you. Youve pretty much summed up how im feeling with the 'wait and see' thing going on right now.

Its good to know that im not alone in worrying about how im going to cope. Its making me feel like a horrible person sometimes because i just really want baby to be average and live an average life.

Instead im worrying that she may hate me for having her as she might be miserable cos she mght not be able to have kids of her own later. Its crazy

 

[BabyBoo36]

Thank you. Youve pretty much summed up how im feeling with the 'wait and see' thing going on right now.

Its good to know that im not alone in worrying about how im going to cope. Its making me feel like a horrible person sometimes because i just really want baby to be average and live an average life.

Instead im worrying that she may hate me for having her as she might be miserable cos she mght not be able to have kids of her own later. Its crazy

Again, something I worry about with Freya. Freya will have a higher risk of having a baby herself with SB because of her own diagnosis. I'm reliably informed by people with SB on the website I visit that none of them hate their parents for having them, but it's still a worry. I posted on here once when my head was such a mess. I didn't know if I was coming or going. I almost felt selfish for keeping her - like I was going to put her through surgery and pain because of my selfish desire to have a baby. It was wrong, but it was how mixed up I felt art the time. I think all we can do is really work hard on their self confidence and self worth, so that they truly believe their life is worth it, and so are they, no matter what their situation. We all want our children to have an easy time in life, and knowing that there is something that might make life for them that little bit harder is soul destroying.

I remember breaking down in tears at work once when someone said "special people have special babies." I might be talking out of line, but that comment made me so angry - I didn't want to be "special". I didn't want my baby to be "special". I just wanted what everyone else I knew had - a "normal" pregnancy that wasn't filled with "wait and see" and "what ifs". A few weeks later someone said to me "These babies aren't special, but they make families special" and for some reason that sat better with me.

Don't feel guilty for your feelings and don't bottle them up. Even if it's just chatting to people on here, talking about it, ranting when you have a bad day helps. xx

 

[Nathyrra]

I can't speak for Turners as I've no experience in it.

I do have a child with DS though. Life is not going to ever be easy for him, he'll always have to try that little bit harder to reach the same milestones as typical children. But let me tell you, that boy changed my life. He is my whole wide world. He is such an easy going baby, so excepting and just plain wonderful! I could gush all day, but the point is he's been an absolute dream of a child.

My second son is very demanding, very typical. Waking up during the night, crying etc and boy did that hit me like a ton of bricks after having my first child. I've struggled with PND with my second boy but not with my first. The diagnosis was tough, it still is sometimes when I think of the unknown. Looking at him though, all the worries vanish.

Gosh I wanna write more but I'm absolutely frazzled with the wee one lmao. Good luck to you. You weren't being rude at all x

 

[summer rain]

My friend's younger sister has Turners, from my understanding it causes short adult stature, certain physical characteristics and people with Turners never hit puberty. Most ladies with Turners are of pretty much normal intelligence (though they may have slight issues with social skills, spatial awareness and Maths) and there have been some Turners ladies who have had successful pregnancies with donor eggs xx

 

[Ersurgeongirl]

A family friend has turners. She had hormone shots when she was little to help her reach an average, yet still shorter, height. She won't be able to have children of her own, but shes normal every other way

 

[lottie77]

Hi my daughter has Down Syndrome and she is currently 16months old and she has so far had no other extra needs to my other children or any other child of her age , she has absoloutely no medical problems , eats no problem, has a brilliant personality , is wearing age 2to3 years clothes cause shes so tall, can say around 15 words and has bags loads of energy I can honestly tell you that there have been zero negatives and that Down Syndrome does not always equal difficulties, health problems and misery , nor in the case of all the DS mums I know.

So be positive and you sound like you are and good luck xxx

 

[FunkyVine]

Kimberley has just had her heart surgery (and has T21). She's doing great and is a bubbly, chatty little 4 month old. For help, support and friendship join the facebook group called Future of Down's - lots of fab and helpful parents.

 

[HPmum2B]

Hi, I am a bit late with a reply to this post, but in case you are still checking in on it, I thought I would reply.

Do you know what heart defect your little one has?
I was born with coarctation of the aorta (a narrowing of the aorta) and was operated on when I was 6 weeks old. My understanding is this is a very common defect to be born with for babies with turners syndrome.
I do not have any chromosome abnormalities, but I thought, if this was the defect your baby is likely to have, it might help to know that I have never had a problem from my heart, have always done all the excersise and activities I wanted to do, and am now pregnant with no complications related to my heart defect.
And my op was 26 years ago! Its even more magical what surgeons can do these days!

 

[kit10grl]

Hi, I am a bit late with a reply to this post, but in case you are still checking in on it, I thought I would reply.

Do you know what heart defect your little one has?
I was born with coarctation of the aorta (a narrowing of the aorta) and was operated on when I was 6 weeks old. My understanding is this is a very common defect to be born with for babies with turners syndrome.
I do not have any chromosome abnormalities, but I thought, if this was the defect your baby is likely to have, it might help to know that I have never had a problem from my heart, have always done all the excersise and activities I wanted to do, and am now pregnant with no complications related to my heart defect.
And my op was 26 years ago! Its even more magical what surgeons can do these days!

Thanks for this. It is coarctation of the aorta that our LO might have. Its really reassuring to know that it doenst neccesarily mean a life of problems so thanks for sharing your story with me.

 

[HPmum2B]

Hi, I am a bit late with a reply to this post, but in case you are still checking in on it, I thought I would reply.

Do you know what heart defect your little one has?
I was born with coarctation of the aorta (a narrowing of the aorta) and was operated on when I was 6 weeks old. My understanding is this is a very common defect to be born with for babies with turners syndrome.
I do not have any chromosome abnormalities, but I thought, if this was the defect your baby is likely to have, it might help to know that I have never had a problem from my heart, have always done all the excersise and activities I wanted to do, and am now pregnant with no complications related to my heart defect.
And my op was 26 years ago! Its even more magical what surgeons can do these days!

Thanks for this. It is coarctation of the aorta that our LO might have. Its really reassuring to know that it doenst neccesarily mean a life of problems so thanks for sharing your story with me.

Well my parents were told when I was born that out of all the heart defects, its the best one to be born with! And the surgeon also told them that heart babies are always really clever! And I would agree! ha ha!