Any help/advice desperately wanted on downs syndrome

[babybumpno.1]

Hi out there. I'll keep this short as I do tend to ramble. Our baby daughter was born two days ago fighting for her life. She has been diagnosed with downs syndrome, has a hole in her heart and possible brain injury due to lack of oxygen at birth. Every day she is getting stronger and she is gorgeous. I'm just wondering if any lovely mums or dads out there can give me any good advice that helped them. I just don't know where to start. I've looked at the downs association web site and read all the handouts but I would love to hear from anyone who has gone through the ups and downs and just offer some kind words of support or wisdom. I'm in the north west xx Thankyou for reading this xx

 

[babybumpno.1]

Of course spelling her condition right might be a start, sorry. I know there is no s on the end I'll blame the hormones xx

 

[Lilicat]

I don't have any advice but I just wanted to answer and send a I hope your daughter continues to get stronger and healthier.

Hopefully someone on here will be able to give you some experience or advice specific to Downs Syndrome.

 

[babybumpno.1]

Thanks that's really nice of you to say xx

 

[danibeth2000]

Congrats on your beautiful daughter! and i'm sorry to hear about the diagnosis, do you know if she has familial for trisomy related down syndrome? because depending on which she has will let you know of her severity. while i've never raised a child with DS, i have done some baby sitting and am also a biologist with a strong genetics background. if you have any questions please feel free to ask. The little girl i watch had moderate down syndrome, so while she exihbited all the classic signs and had many of the health defects for the most part her mental impairment was not terrible, she still went to school but never went past middle school if i can recall, in her traditional edu. her parents taught her everything else she needed, most down syndrome kids are incredibly functional and want to be just like all the other kids out their and with a few exceptions they can be. I wish you the best of luck and will say prayers for your family and your daughter.

 

[Nathyrra]

Congratulations on your beautiful little fighter

I have a son with Down Syndrome. Not detected until birth, pregnancy was completely typical, no problems or warning signs.

You'll probably find yourself feeling a range of emotions right now. From high highs to extremely low lows. It's important that you let yourself feel all of these emotions, they are what are going to get you through it eventually. You'll never be positive all the time, but neither will you be negative. Embrace all your emotions, they are what make you human

I can tell you from experience, that my sons 'birth day' was the best and worst day of my life. It's hard to explain why, but I'm sure you understand what I mean. He is a wonderful, sweet natured, cheeky and smart little boy. He's all the things I never thought he'd be that day. But there isn't a day that goes by I don't worry about his future. You will probably also find, like myself, your worry will be mostly about the unknown. Living in the here and now, watching your sweet baby grow will give you the confidence that everything is going to be different for you, but it's not going to be worse.

Children with DS now are given a huge boost in life. My son gets Physiotheraphy and Early intervention which helps keep him on par with his peers. This has never been available before. I found it comforting to know that my son was born into a generation that had all the tools to help him grow. There's not a single adult person with DS in the world that's had the helping hand our children have, so it's impossible to compare them. Every single child is different, and will have strengths and weaknesses, regardless on the 'type' of DS they have.

Our children aren't less than typical children, their brains are just wired differently. Our children learn by repetition. Whilst their brains don't cope well with mathematical things, they absolutely excel in certain fields like Music. My son can shake a Maracca in time to any musical beat. I don't know any other 1 year old that can do that! Find your babies strengths and focus on those.

I think I've rambled on loads! Sorry about that I just want you to know that my life with my son is just wonderful, full and full of happiness. I never thought it would be at the beginning. You will learn and grow so much in your time with your baby, as much as she will

If you need any more info you can PM me anytime.

Hope you get your wee fighter home soon x

 

[hapi2bhealthy]

Congratulations on your beautiful little fighter

I have a son with Down Syndrome. Not detected until birth, pregnancy was completely typical, no problems or warning signs.

You'll probably find yourself feeling a range of emotions right now. From high highs to extremely low lows. It's important that you let yourself feel all of these emotions, they are what are going to get you through it eventually. You'll never be positive all the time, but neither will you be negative. Embrace all your emotions, they are what make you human

I can tell you from experience, that my sons 'birth day' was the best and worst day of my life. It's hard to explain why, but I'm sure you understand what I mean. He is a wonderful, sweet natured, cheeky and smart little boy. He's all the things I never thought he'd be that day. But there isn't a day that goes by I don't worry about his future. You will probably also find, like myself, your worry will be mostly about the unknown. Living in the here and now, watching your sweet baby grow will give you the confidence that everything is going to be different for you, but it's not going to be worse.

Children with DS now are given a huge boost in life. My son gets Physiotheraphy and Early intervention which helps keep him on par with his peers. This has never been available before. I found it comforting to know that my son was born into a generation that had all the tools to help him grow. There's not a single adult person with DS in the world that's had the helping hand our children have, so it's impossible to compare them. Every single child is different, and will have strengths and weaknesses, regardless on the 'type' of DS they have.

Our children aren't less than typical children, their brains are just wired differently. Our children learn by repetition. Whilst their brains don't cope well with mathematical things, they absolutely excel in certain fields like Music. My son can shake a Maracca in time to any musical beat. I don't know any other 1 year old that can do that! Find your babies strengths and focus on those.

I think I've rambled on loads! Sorry about that I just want you to know that my life with my son is just wonderful, full and full of happiness. I never thought it would be at the beginning. You will learn and grow so much in your time with your baby, as much as she will

If you need any more info you can PM me anytime.

Hope you get your wee fighter home soon x

i hope you don't mind me butting in here but I just wanted to say that I am a special ed teacher and mommies like you make the MOST wonderful mommies!
And to the lady whose baby has just been born, this woman has just given you some beautiful advice, your baby is indeed SUPERHUMAN and gorgeous, I wish you both nothing but joy in raising your gorgeous, amazing children- they bring joy to other people (such as their teachers!) like you wouldn't believe!

 

[lcgoodac]

We have family friends who had a little boy born with Down syndrome. They were unaware of this until he was born. He was born with a hole in his heart and at the age of 18months was diagnosed with leukemia and spent 18months in and out of hospital havin chemo and there were times where it was touch and go. he got through it and is now 11!! he attends main stream primary school 3 days a week and special school 2 days a week. he is going to secondary school this year and again will mix between mainstream and special schools. he doesnt talk very well and signs using makaton as he is also deaf and has had many operations to improve his hearing. he has been through so much in his life all ready but he is so happy and is becoming more and more independent!

 

[Antsynewlywed]

https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

This is a beautiful step by step account of things that happend. BEAUTIFUL!

 

[ChesMik4eva]

I don't have any children with DS but I just wanted to say I hope you're daughter stays healthy and I wish you all the best.

I found this website - this woman has a daughter with DS and her birth story is so beautiful, I really recommend you read it.

Like you they had no idea until she was born that anything was wrong.

https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Good luck.