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Original poster

My son arrived and he has downs syndrome!

80 replies

Debsbabe · 19/08/2004 00:07

Hello everyone

I am Debbie 31 years old married to Scott 33 years old i have a daughter Ricarda age 14, a 22 month old son Callum and a 7 day old son Cameron.

Cameron has been diagnoised with Downs syndrome which wasn't picked up at birth, in fact his midwife couldn't see anything wrong herself and neither did the first baby doctor to come out but after she thought he had a clicky hip and called another doctor he icked up on it, so for the grand total of 5 hours we had a normal healthy baby with nothing wrong but that was soon to be shattered.

Anyway they took bloods that day and the results were back today and he does indeed have downs syndrome, i thought i had prepared myself for the truth but i still found myself shocked and upset when they said that he has downs. It seems so daunting and overwhelming i am not sure where my head is but i cant take everything in at the moment, i try to concentrate on what they are saying but all i see is the mouths moving!

My little Cameron is still my perfect little angel regardless of what disorder he has! He is beautiful to me.

Love Debbie and Cameron xxxx

OP posts:
Piffleoffagus · 20/08/2004 11:56

hiya debs, gldd that Camerons feeding is coming along well, that is one less thing to have to worry about, I saw his photos on BW and he looks just gorgeous, how are you bearing up?
Are you getting plenty of support?
I'm only a train ride away petal...
Love
Jane and Emmy

Original poster
Debsbabe · 20/08/2004 12:10

Hi Jane

Evryone around me has been great and very supportive, i am lucky to have such a lovely family and some great friends. I still am in a slight state of shock i suppose, i keep looking at him and he is so perfect that i cant see that anything is wrong with him! If that makes any sense? I know there is but like i said to my friend last night that Cameron is a normal baby he is just a special normal baby with an extra chromozone!

How is emmy? i haven't seen a recent picture of her you will have to post the link!

Speak soon honey

LOve Debbie xxxx

OP posts:
maddiemo · 20/08/2004 14:14

Congratulations Debsbabe. I also think Cameron is a lovely name.

dinosaur · 22/08/2004 11:26

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Aero · 22/08/2004 13:27

Congratulations to you and your family on the arrival of your beautiful little boy. Welcome to mumsnet too - lots of useful advice, support and 'virtual' friends to be found here.

HelloMama · 22/08/2004 13:57

Debbie I hope you find mumsnet as useful as we do! its very addictive by the way so be warned! congratulations on the safe arrival of Cameron (wonderful name... nearly called our DS that!)

geekgrrl · 22/08/2004 14:22

Hiya Debbie,
another big welcome to mumsnet! I have a 3 year old daughter with DS and two other children (5 & baby) without. My little girl is a real joy and very cheeky, right now she is racing through the house playing hide-and-seek with her big sister. Like you we also did not have an immediate diagnosis, for us it took a day for a tentative one from my midwife and then five days to get the blood test result. Those first few days and weeks were so hard, but it sounds like you have the right attitude to come through it! How is Cameron's heart? Has he had an echo yet?

fabarooney · 22/08/2004 20:31

Congratulations, Debbie and welcome to the world, Cameron (gorgeous name, btw).

Original poster
Debsbabe · 22/08/2004 23:48

Hi there

Cameron has to have an Echo and an ECG on the 2nd September so i am really worried about these. I had a detailed heart scan at my 20 week scan and they couldn't pick out anything wrong but then again they also gave me a 1:1100 chance of having a baby with downs! The doctors have listened to his heart and so far all seems well but i will find out at the appointment. nerve wrecking time!

How was your daughters Echo when she had it done? They have said he has a 1:3 chance of having some heart problem and the way our luck seems to be going i dread to think what the results will be.

Love Debbie and Cameron xxxx

OP posts:
hana · 22/08/2004 23:52

Debsbabe
just wanted to add my congratulations on the birth of your little son Cameron. It's a really friendly site here - I hope you can get lots of support and advice as Cameron bigger and bigger!!

clary · 23/08/2004 00:04

Debsbabe
hello and welcome as others have said.
You will find much support on here. My niece has DS and she is a lovely lovely child, the delight of her parents' lives. She is just about to start mainstream school (almost 5) and has done so well, it amazes me. Her mum (my DSister) is a poster and I'm sure will post to help/advise you (away atm). Yes, disgnosis is a shock but as you say, the baby is yr little angel. One piece of 2nd-hand advice as it were, take all the help and support you are offered. My niece had a home-learning prograamme (called Portage) from an early age and it was excellent, also regular speech therapy. But those with direct experience will help you more I am sure.
Good luck, Cx

geekgrrl · 23/08/2004 07:25

hello again Debbie,

My daughter did have a heart defect and had surgery for it when she was a few weeks old. She's all fine now though, completely fixed. They heard a slight murmur when they gave us the blood test result and checked her over, and dd saw the cardiologist a few days later. Well, fingers crossed that all is well with Cameron's ticker!!!!!
How is your husband taking it all?

Thomcat · 23/08/2004 12:27

hi Debsbabe

When is the heart check appt? Will be thinking of you.
Lottie had her heart checked the day after she was born at the Royal Brompton, a day ingrained in my memory forever. Luckily she had a healthy heart with no problems but I won't forget how I felt in the moments leading up to that news.

Hope it all goes well.

Lots of luck and love.

PS - I was in a very low risk group too!

eidsvold · 23/08/2004 12:33

just wanted to wish you all the best for the 2nd of September. Dd's heart defect was detected at 20 weeks pregnant and confirmed via a fetal cardiac scan - luckily her heart defect was serious but easy to repair and she had surgery at 8 weeks old. Her heart is now good as new. Like Lottie (TC's little one) her check ups and surgery were done through the Royal Brompton. Is that where you have your appt??

Earlier this year they gave her the all clear and said it is like a 'normal' heart and here in Aus at her cardiac checkup the cardiologist complimented the surgeons and said to me it was a brilliant job.......and that dd was doing very well.

Again I hope all is well with his heart.....

Blu · 23/08/2004 13:37

Debs: These are links to an organisation which specialises in seeing parents through this sort of thing. They have a free helpline and are sympathetic and supportive, by all accounts.

CHF helpline

Down's heart group

Original poster
Debsbabe · 23/08/2004 14:38

My husband was a little strange with it all at first you see 3 years ago i was pregnant and at the 20 week scan they discovered that our baby had spina bifida. she had it low down in her back and the outlook was good so we decided that she had every right to live and lead a normal life besides she was ours no matter what disability she may have.

At 23 weeks my waters broke and on the 25th June 2001 at 4.20pm our daughter was born weighing less than an pound. she was so tiny but so very perfect. she lived for 25 minutes then she died in my husbands arms. He carried her in her coffin at her funeral and has been profoundly affected about it ever since so have i but he doesn't like to talk too much about it all so when they said about Cameron i think he worried even more that something was going to majorly go wrong and he couldn't cope with doing all that again.

I think i have managed to explain to him that the situation is different this time and so far Cameron has had a clean bill of health and now he is so much better with him.

Sometimes it seems that life has been against us but we keep solidering on.

Love Debbie and Cameron 11 days old xxxx

OP posts:
dinosaur · 23/08/2004 15:40

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Dingle · 23/08/2004 15:55

Just read your last post Debs, reading about your loss a few years back makes me feel how very special our children are to us all, "wart's and all!" Having a child with special needs may not be what we expected and life may not always be plain sailing, but being a parent isn't that simple anyway is it?
When dd was born I was stuck there in hospital with my her not feeding, I admit, it did cross my mind "why us?" as I lay there, crying to myself in all my self pity, I heard that one of the other mums had lost her prem baby at 27 weeks. I cried so much that day- I felt so guily-what did I have to cry about, I had this beautiful little girl to love and care for-I should have been celebrating not feeling sorry for myself.
I cannot imagine what you are going through, it is not just the case of getting used to the fact that your darling little boy has DS it must surely be so much more for both you and DH to deal with! But you will deal with it, I am sure by what I've read, you will not just cope, you will enjoy your new addition to your family for the little boy he is and not for the condition he has!
Hope my waffle makes sense. Our hearts and thoughts are with you, especially for the test results.
We were lucky, dd had her first heart scan within hours of us being told of their suspicions, so, even though she had no heart defects, it all merged into one big event.
Seems so long ago now, as I look at her and see how well she is doing. I have found reading the other MN events, makes it all come flooding back.
please contact me through CAT if you want to at any time, I didn't have the luxury of talking to other mums- not really until discovering MN of course.

luckymum · 23/08/2004 15:58

Good grief Debbie, you've really been through it already haven't you .

Glad to see on your other thread that Cameron is getting the hang of feeding, we had a huge battle with that too! My dd has heart problems (not DS) so if you've any questions about the echo, I'd be happy to help.

Original poster
Debsbabe · 23/08/2004 19:47

I would like any input anyone can give me on the Echo as i am not entirely sure what it is?

I know all about the ECG but that is it!

Love Debbie and Cameron xxxx

OP posts:
Twiglett · 23/08/2004 19:55

message withdrawn

lou33 · 23/08/2004 19:56

It's basically an ultrasound of the heart. Done in the same way as a pg scan. They can look at the blood flowing around the chambers, check for problems etc, it's all painless, though the jelly might be a bit cold!

Original poster
Debsbabe · 23/08/2004 19:59

all these tests sound worse than what they are i suppose, I did wonder if it was a type of ultrasound but was unsure just wish all these tests were over so i know for sure where we stand with his health! I just hope and pray that there is nothing wrong with his heart.

Love Debbie and Cameron xxxx

OP posts:
geekgrrl · 23/08/2004 20:26

oh debbie what a sad story. That experience must make this even harder for you all.

As for echos - my daughter always slept through hers (but then she seemed to sleep through everything back then). She's got one coming up next month, don't know how she'll take it now she is a feisty three year old. The last one was two years ago.
Hopefully if Cameron seems well now his heart will be in good working order!

Piffleoffagus · 23/08/2004 20:33

Debs... the echo it is an ultrasound, you get sudden precise and often unintelligible info from highly trained doctors about blood flow, valve reflux, the speed of the blood through the valves, which equates to a pressure difference which is measured in mls of mercury.. (bizarre but true)
It is baffling... if Camerons weight gian has been fairly good so far then it is possible that he does not have a serious heart problem or even any at all... AS you know I struggled hugely with Emmy's lack of gain and she has a relatively minor heart "fault", plus try not to worryas with heart issues you get literally the top stream of doctors and specialists treating your child... Ours was superb... They KNOW how to to talk to parents at leat in our experience.
Where is it Cameron is being seen Debs?

Good luck petal, we're all here for you
xxxx