for those worried about having a child with DS

[rock_chick]

I gave birth to my little boy 10 weeks early ..he passed away on the 6th of April...

I dont want to offend or upset anyone but I wanted to share my story of love, committment and in no way disappointment.

I was given an indication at my 20 week scan that he had a large nuchal fold. this indicated either he had heart issues or DS - unfortunately my brave little soldier had both. he measured normal in bone length and he had a nasal bone visible.

He was my absolute heart and soul with a smile that melted heart, melted and connected with everyone around him...nurses and doctors adored him....family were infatuated with him....he created a bond with people he didnt even know....

I may upset people when I say this - but reading about others panicking and worrying themselves so much about their child possibly being diagnosed with DS like it would be the worst thing on earth to happen to them actually upsets me a little...because he brought so much joy and so much love and at the very end of his life I would have wanted to take away all of his other health issues, but never his DS.

You will love your baby regardless of 'features'.....you will want them to be with you and love you regardless of issues found - in fact you will probably love them more IF issues are found..

I came back to this section to update everyone about my son..My beautiful baby son....as so many people on here were chatting with me when I was posting here when pregnant....

my son was a gift....a very short gift...but cherished....absolutely.

 

[Mummy of Ange]

Firstly I'm so sorry for your loss.

I totally agree with everything you have said and I'm the one worrying about downes after an increased nuchal fold at 20 weeks.

Just like you have correctly pointed out I know more than anyone I shouldn't be worried as I never even got to fetch my twin boys home they died shortly after birth.

I keep telling myself be grateful to fetch a baby home but the worry is still at the back of my mind.

I'm so sorry if I have upset you in anyway it wasn't intentional and I can fully understand why you wrote the post.

Xxxx

 

[_Vicky_]

Big hugs rock chick - what a lovely boy he looks in your pic and sounds and floaty kisses to your little soldier xxxx

 

[jennijunni]

What a beautiful post. Your son was given to YOU for a reason, and it is so wonderful to hear how blessed you are because you got to be his mother. I am so sorry he could not stay with you longer, it seems even with his short life he had much love and was cherished by many. Lots of hugs.

 

[mightyspu]

Beautiful post, and a beautiful boy. So sorry that you didn't get to spend more time with him.

Thanks for sharing

 

[rock_chick]

thank you all.

Children with DS should be cherished. They are a gift that a chosen few are given.

Thanks all xxxx

 

[paigeypoo]

"""I may upset people when I say this - but reading about others panicking and worrying themselves so much about their child possibly being diagnosed with DS like it would be the worst thing on earth to happen to them actually upsets me a little...because he brought so much joy and so much love and at the very end of his life I would have wanted to take away all of his other health issues, but never his DS."""


me too. id give anything to have my son here with me in good health and DS. i miss him every day.

 

[Bats11]

Im so sorry for your loss, your post really touched my heart.

I have a DS cousin, when ever my aunty takes him out people look and immediately feel sorry for my aunty, she even gets comments about how hard her life must be, but little do they know my aunty wouldnt change her boy in anyway, he is so very sweet & special & really does light up any room he walks into, I adore him.

 

[Nathyrra]

Oh no.. My heart absolutely broke for you when I read this post.. So terribly terribly sorry. I have tears in my eyes reading this.

I agree a million percent with what you've said. My son is the light of my life and my heart feels so sore for you right now. Be kind to yourself..

 

[amotherslove]

i worry about downs.. but not because i "wouldnt want" a baby with downs.. but because i don't want my child to have ANY health issues. if my baby has downs will i love or want him/her any less? absolutely not.. but severe cases of downs can come with other complications as well and i simply wants a healthy happy child.

i agree with you totally, downs is not a reason to think you "messed up" or don't have a "normal" child.. it'll just be a little different at times, but just as incredible

so sorry for your loss, i have seen you in the loss forums as well he was lovely.

 

[Hellylou]

I totally agree with this. I had a loss at 16 weeks last year due to PPROM and this time around I refused all screening for DS although I am 37 and higher risk for age. I knew first of all I wouldn't have amnio, and also that I would not terminate if DS was found anyway. So this one may have it, I don't know, but I know it wouldn't be the end of the world if it did.

I am so sorry for your loss. He's beautiful.

 

[Jmommy]

I am so sorry for your loss!

Thank you for your post! Last July I had my son at the age of 22 and when he came out with Down Syndrome everyone was shocked. Thankfully we are so blessed that he did not have any other medical issues and he is a healthy 10 month old who happens to have DS. I completely agree with what you said about people seeming to panic about their baby maybe having DS, I understand how it can be scary but these babies and people with DS are so amazing! What a gift they truly are and my heart was broken reading your post and I wish you could have had more time with your angel.
God Bless You!

 

[rock_chick]

I never feared having a child with downs syndrome, I was just so grateful that after so many losses that this angel wanted to stay.

I am still not coping losing my son, I would give anything to have him back here with me.

From the first moment that I felt him, saw him, he was Haydon. He wasn't just my child with downs syndrome. he was beautiful in nature, a true angel, a gift.

During my pregnancy I worried more about what other people would say, because people can be cruel, but I never worried about Haydon because I knew I would love him regardless. and I did, and I do.

Thank you to those ladies who have replied to my post. Particularly the ladies who have been gifted with a child that has downs syndrome, you are truly lucky, special and blessed that they chose you.

Once I am mended a bit more, my husband and I may look into adoption. But after our experience with Haydon, we would only adopt a child with Downs Syndrome. He brought THAT much to our lives.

xxx thank you xxx

 

[jogami]

What a PRECIOUS ADORABLE little boy! An angel too good for this earth! How wonderful that he chose you as his mommy.

Treasure the special moments. God bless you always

 

[poppy]

I am so sorry for your loss. Your son is beautiful.

xxx

 

[Leinzlove]

I'm sorry for your loss. He is adorable. My aunt was born with DS and is now nearly 50 years old. She's had a few heart surgeries, but she is a very loving person.

 

[Ljayne]

Just wanted to say I am very sorry for your loss, you were blessed with him but I think he was equally blessed to have you as his Mummy.

I like a previous poster also turned down the downs screenings, I wouldn't have the amnio and if baby has downs then it makes no difference he will still be my baby boy

xx

 

[rock_chick]

thank you xxxxxxx

my heart is still broken and isn't mending......

but to have a child with downs syndrome....there really is far worse storms at sea xxxxxxxx

 

[Viperbunny]

I am so sorry for your loss. I truly think a loss changes your priorities and prospective.

At my 20 week scan my daughter was measuring small, but they told me not to worry, they would just keep an eye on me. At 26 weeks, she was at least 2 weeks behind on growth and at 29 weeks 1 day she was delivered by emergency c section. She was more than just small. She had birth defects on her hands and feet, and later, we found out, her heart.

To us she was perfect. And we were lucky to have 6 beautiful days with her before she passed away from Edward's. When things first looked iffy, before she was born, we were worried about downs. Then, after she came out we didn't care. She was ours and she was perfect and we would have laid down our lives for her.

It is drilled into us that babies come out perfect. The saying is, "as long as the baby is healthy." But to people who end up with sick babies, this saying doesn't hold water. It doesn't matter that the baby has an illness, or isn't what other people would call perfect, you love your child just the same, if not more.

I am pregnant with baby number 2, and I did have an NT scan that the doctor's set up and basically told me to have. Everything looks great and my little one was give a 1 in 100,000 chance of having the same genetic disorder, so I am more than happy with that result. This time I don't worry about having a textbook perfect baby. I know that no matter what, this baby will be perfect to my husband and I and we will love him or her with all our heart.

 

[chattyB]

Congratulations on the birth of your beautiful son - I'm so sorry that your precious boy couldn't stay . Your post and picture of Haydon have really moved me - I've been worrying over the past week what would happen if my scan on Thursday indicated DS, wondering how we would react, what the families would say, fear of the unknown i guess. After reading this thread, it is absolutely clear to me that a baby with DS is a huge blessing and will be loved and cherished for who they are. I'm no longer worried about the scan.

Thinking of you and praying that your broken heart will start to heal in time