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Please can all parents of children with Down's Syndrome come and chat to me??

90 replies

RememberToPlaywiththeKids · 21/09/2010 20:07

I was told today at my 20 week scan that our baby almost certainly has DS as i had a 1 in 5 risk at 12 weeks and they found a VSD today (hole in the heart).

I cannot go through a termination - it would torture my soul for the rest of my life.

DH thinks having a child with DS will ruin our DD, DS and his life. He would terminate.

He is accepting my position but I am feeling so alone and that I must be 'the strong one' and I would really love to hear all the positive aspects and stories about having a child with DS to remind me that I am not being cruel 'putting my family through this'.

:(

OP posts:
TheCrunchyside · 21/09/2010 21:54

My sister has DS and is now in her thirties. She is a happy woman with friends and interests. She lives in a lovely group home but I'm sure she would have been much more independent if she hadn't had severe visual impairments as well.

It was hard at times and a worry to my parents because they wanted so much to ensure she reached her potential.

and as her sister i'm conscious that it will be my job to make sure she is safe, well and happy within the care system when my parents are no longer able to do so. That sometimes does feel a bit stressful but it most certainly does not ruin my life and many many people wil have to look out for relatives vulnerable through age or illness

It is a tough road having a kid who isn't NT and I was relieved when 12 week scan and then the birth showed my ds didn't have DS. However by 3 it became apparent that he had ASD and developmental delay and may well struggle more than my sister because of his communication problems.

hope you can keep talking with your husband. he is welcome here too.

Lougle · 21/09/2010 22:17

Another one here whose child does not have DS, but is disabled.

We didn't know DD1 had a disability. Things that should have flagged her were missed, and others were flagged, then dismissed. But she was finally plonked truly in the 'system' at 2 years 9 months, when she started falling over and was diagnosed first with Epilepsy, then, following a brain MRI, a brain malformation.

To be honest, I think life for us would have been so much more doable if we had known antenatally or soon after birth. The first 2 years of her life were punctuated with me thinking that something wasn't quite right, but being told she was fine, then thinking I was simply a bad parent. It was such a relief to finally have a reason for all the little things that weren't quite right.

Over the last couple of years, we have had lots of appointments. SALT, Physio (although they always chucked us off their books on referral because DD1 can't be 'fixed' easily), OT, Portage, Paediatrician, Children's Learning Disability Team.

DD1 is globally affected by her malformation, so similar to DS in that the extra chromosome is present everywhere, so global.

Now, at 4.9, the appointments are lessening, because she is starting at special school, so all SALT OT & Physio is done on site. Portage only work with pre-school children so 0-school age, so that has stopped.

Even her Paediatrician appointments will be at school now, as her Paediatrician holds a clinic on-site - she will be brought from her classroom to see him with me, then she will go back to the classroom so that the Paed and I can talk.

Honestly, the life with a child with SN is challenging, but it really is rewarding too. It's a bit like eating a packet of Revels - you get some bits that are lovely, and others that you could take or leave Smile

devientenigma · 22/09/2010 10:18

Hi again,
sorry just reread my post and it does sound blunt, the outcome of being up late writing reports for various meetings I have coming up with my son.
My son as well as being down syndrome has a heart condition among many other medical, neurological, behavioural and physical disabilities.
Was just wondering also has counselling been offered??

RememberToPlaywiththeKids · 22/09/2010 12:51

Both of your stories sound tough. Is it something that's easier to do than imagine if that makes any sense? Is the thought worse than the actual or do you wish your life was different every day and feel that you are on the very edge of coping/enjoying being alive?

OP posts:
Sidge · 22/09/2010 13:18

For me, the first year was spent on autopilot, just getting through every day. It was very 'task orientated' as DD had so many acute and immediate health needs, so my days were full of expressing, tube feeding, medication, oxygen saturations and trying to be a good mum to DD1 as well! DD had open heart surgery at 6 months.

Around DD2s first birthday I got very depressed, I think it was a combination of exhaustion and PTSD. (Her birth was very traumatic). That lasted about 6 months and then life became, well, pretty normal really. We'd got over a lot of the medical stuff and apart from lots of therapeutic support and appointments, we just got on with it.

I had lots of "I don't know how you do it" comments from well-meaning people, but TBH how do any of us parents do it? We do it because we love our children immensely regardless of how their chromosomes are organised

Yes live is different, at times it's bloody hard, I do worry about the future but try not to think too far ahead - there's no point worrying unduly about things so far ahead.

I do wish DD2 didn't have her syndrome, if only to make life easier for her, but I never wish I didn't have her and we have a good life.

RememberToPlaywiththeKids · 22/09/2010 14:46

Sidge - does your DD have DS and may I ask what kind of heart defect she had? Will she need any further operations?

OP posts:
FnD · 22/09/2010 15:39

just popping in quickly - just wanted to see how you were doing today.

Saw your comment and just wanted to say that imagination is so much worse than real life. I only ever get down about my life (note that I said my life not my ds's!!!) when I start thinking of the what if's rather than the what is actually happening right now.

When my ds was born - before I had even left the birthing room, I imagined a life of misery, that I would have to give up work, that I had destroyed my other childrens life, that my partner would leave me, the list goes on... 2 years on none of that has happened nor have the challenges that I associated with having a ds with ds. Dev is right - you cannot know what life will be like for you from hearing our stories - but it is important for you to know that precisely because you cannot know what life will be like, you cannot assume that it will all be terrible.

Right I have to get back to work now.

Sidge · 22/09/2010 15:41

No it's not Down's Syndrome she has, she has Prader-Willi Syndrome. We didn't know she had it before she was born.

She was also 6 weeks early, had some probable brain damage as I had a placental abruption, and had 2 holes in her heart - a PDA and ASD. They were probably a result of her prematurity as people with PWS don't usually have them.

They were both repaired and she shouldn't need any further surgery. We see cardiology yearly but this year they said they didn't want to see her for 3 years which was good news Smile

midori1999 · 22/09/2010 17:01

My youngest (third) DS has Downs Syndrome. He is 6 1/2. My older two are 14 and 9 now.

My pregnancy with him was unplanned and I seriously considered a termination when I found out I was pregnant, but couldn't have gone through with it. We didn't know he had Downs until after he was born. I consider that very lucky as I have to admit I am not sure what I would have done if I had known when I was pregnant and I am so glad I have him.

I think until your child is born, or until you have a child with Downs or know someone well who has Downs, you tend to see the condition first, person second. Once they are born or you know someone, they are the person first and just happen to have Downs Syndrome. Caring for a baby with Downs is just like having any other baby, only much easier IMO. (DS3 slept through the night from birth!) Yes, things are different and this becomes more apparent as the child gets older, but it becomes what is normal to you.

My older two sons adore their younger brother and he adores them. My DH is not the father of my children, we met when DS was 4 months old, and he adores all of my boys.

My son had a VSD and an ASD when he was born, both closed by surgery at 6 months and no problems since.

I am quite a selfish person really and not that maternal compared to most people, although I love my children. I wouldn't change anything about DS3 for the world though. I set up my own business after DS3 was born and I honestly feel that him having Downs hasn't limited mine or my other children's lives in any way.

(just in case you're worried, my first marriage didn't break up due to DS3 having Downs, it was on the cards prior to me getting pregnant with him)

SanctiMoanyArse · 22/09/2010 17:15

'Both of your stories sound tough. Is it something that's easier to do than imagine if that makes any sense?

Anopther with a different disability in the family but offering anyway

my experience is that it is easier to do than imagione becuase when you image antenatally you don;t have that same sense of love and protectiveness that a baby brings.

Defintiely speal to the downs syndrome association (ds3 came with a high risk of DS (he ahs adifferent Sn LOL) and they were great).

But whilst I would say most DH's do come around also do think about how you would cope without him. i do know someone whose DH told them to leave the baby in the eard or lose them (they left the baby Sad) and it can happen.

Does your Dh have experience of people with an SN? it's just my experience is that people who do tend not to find it as scary. perhaps the DSA or your future HV would know someone who could chat to him from a dad's eprspective, or bring their baby with ds to meet him?

Lougle · 22/09/2010 19:36

RememberToPlaywiththeKids I think it is impossible to imagine, because when you imagine having a child with SN, you imagine it being all-encompassing, all-consuming. So you only imagine the difficulties.

So, let me tell you about DD1, the apple of my eye, who happens to be disabled.

She has sparkling blue eyes, and brown hair that is always messy, no matter how much I brush it. She has a really, really cheeky grin, and has learned lots of phrases to tease people with, such as 'you're a pickle', 'you're a rudey two-shoes', 'you are poo-poos' (Blush), 'you're a slow-coach' (ironic, given that she can't walk in a straight line and runs like a drunken soldier Grin).

She is affectionate and compassionate. She always notices when someone is sad, when they've hurt themselves, when they are cross, when they are tired. She sometimes doesn't know appropriate responses, so I have to steel myself for times when she says 'go on, then. Cry.' But she means no harm, she just sees it as a cool experiment.

She is engaging to the point of domination. And no-one can escape her appeal. Even my brother, who she has seen only around 4 times in her life, because he has chosen to distance himself from the family. He visited earlier this year, tried to make his disinterest in her clear, but it was plain that she had made her mark. The school receptionist has already taken a shine to her, and she has only attended for a total of 7.5 hours over 3 sessions. She does get very confused about facial expressions though, and she will often say 'but the childrens don't love me', because unless they are constantly smiling, she can think something is wrong.

DD1 adores water, gluing, painting, play dough and cookery. She is obsessed with water. She could spend all day in the toilet, washing her hands. She just loves it.

DD1 is very, very, funny. And she knows it Grin. She will watch us laugh and then pretend to be bemused and say "what you laughing for?". She knows it is because she did something funny.

DD1 is so polite. She says please and thank you, she says 'excuse me' and sorry. She even thanked the nurse through her tears when she gave her the MMR booster.

For DD1, the world is a confusing place. Music can frighten her, and we can't have any TV programmes on in her presence unless it is CBeebies, Barney or Dora. That is starting to be tricky, because DD2 is growing up, and at 3.1, is starting to prefer CBBC. But we will work around it. DD1 just isn't there yet.

DD1 has very limited concentration skills (30 seconds -2 minutes for the majority of things), and her play skills are very immature. She can't cope with concentrated activities. If DD2 and DD3 (17mths) sit down to play with Vtech animals, for example, DD1 will try and knock them away. But we distract her, and the game for DD2 & 3 continues.

Life is hard for DD1 at times, and every day things can be a struggle because she gets so anxious and routine-obsessed. But our lives would be so much the poorer without her. She truly is magical.

Please don't try to imagine life with your baby who has Downs Syndrome and think that you can make your decision based on that. Appointments, therapies, struggles. You will be imagining the condition, not the person. When your baby is born, he or she will be their own little person. OK, they will have an extra copy of a chromosome, but they will be unique.

You are in an amazing situation right now. You can plan, you can prepare. How I would have loved that. If you are going to continue your pregnancy, you can get ahead. Why not sign up for a Makaton Course early? Start right from the beginning to give your baby the best chance of progressing well.

devientenigma · 22/09/2010 20:14

I agree to some extent with lougle, treat the baby as a baby, see past any appointments etc, learn to bond. You have the chance to plan and prepare. Maybe go along to any local down syndrome groups. Ask the midwife for more support around your concerns. Involve your hubby whenever you can.
Remember down syndrome is a huge spectrum of ability and issues. My life has changed dramatically since having my son. Life is very challenging for him as well as us and of course I would love to make things a lot easier for him.
If it helps we are at the severe end of the spectrum!! Life is tough, though from what I gather we are a minority.
Though now I am a different person than I was before I had my son, I have so many qualities I never knew I had.
I also have other children who would also say life is hard, though wouldn't and couldn't live without him.
Take care and I hope you find some peace in your thoughts soon.

encyclogirl · 23/09/2010 16:00

Dear OP, just found this. Felt compelled to post to you.

My daughter Mollie was born in London 14 years ago. I rembmber the moment she was born so clearly. The vague sense of panic, the medical team looking at her a bit too closely, the horrific moment of understanding. I remember bashing myself on the head over and over again as they were trying to stitch me up so as to wake myself up from the nightmare I was clearly having. You will be spared this experience and I envy you that. I know that's precious little comfort to you right now.

I won't take you through a play by play of the last 14 years, but I will tell you that we had ended up with a stunningly beautiful, pixie like, spoilt, stubborn, funny, empathetic, hormonal, bossy, wonderful, lazy, energetic, gorgeous, and often extremely typical teenager.

We moved away from London and came back to Ireland, (I'm Irish, my husband is English), We have a fantastic service for her here. We live in a small community and in the spirit of 'it's takes a village', everyone looks out for her and cares about her.

She has completely changed our lives, as your child will change yours, but it's a way better life than I could ever have hoped for.

Before Mollie, we lived in London, I travelled all the time for work, my husband worked 6 days a week. We expected she would just be born and slot into our lives and we would carry on as we were. Within 18 months we'd both chucked our jobs, sold our house and moved to West Cork. My husband took 5 years off and I took a much less stressful job.

We have another child, he's now 10 and we both work full time again, the stress that comes with this shitey economy notwithstanding, we are living the best life possible.

Mollie is at the centre of it.

This morning, she casually informed us that school was "All Gone - I'll stay here" We ended up having to bribe her with a family bicycle ride, Camp Rock
2 the Movie, (don't ask), a trip out for chips and curry AND swimming tomorrow, to get her out and onto the bus. Her powers of negotiation are outstanding.

Her ability to boss her brother is outstanding.

Her ability to get whatever the Hell she wants at the time is outstanding.

My sister calls her Voldermort, my son plays the Empire March from Star Wars on his phone when she marches into a room on a mission to get control of the television. I tell you this just in case noone has warned of the capacity for evil genius that lurks within your unborn baby as we speak. You will dance to his/her tune, you will bend to his/her will. It's inevitable.

Your baby is amazing.

I could write pages, but I won't. I know exactly where you are right now.
I never thought I'd be where I am right now, let me tell you it's a great place.

I wish I could attach a few pics of my evil genius. Feel free to tell me what I already know, she's gorgeous.

Wasn't so gorgeous at 7.30 this morning when she called the dog a bollix, but still...

Anyway, best of luck to you, you will play a blinder.

xx

encyclogirl · 23/09/2010 16:05

Should have read..

"then you could feel free to tell me what I already know, she's gorgeous."

waz77 · 23/09/2010 17:47

Our DD doesn?t have DS but I can feel your pain. We were told at 24wks that babies brain wasn?t developing properly and had a hole in heart. Baby wouldn?t survive so did we want to terminate. We chose not to as could feel baby move and couldn?t face termination at advanced stage of pregnancy.

DD has an unheard of and unpronounceable condition but at nearly four is walking (in her own way), talking and keeping us all entertained. Through SN baby groups we have made many special friends whose children have, among other conditions, DS.

Its def hard going through a pregnancy not knowing what lies at the other side, but one advantage is you have mourned (not sure if thats right word) before your baby is born and can start from a better position. (Hope this makes sense)

A physio once told me that having a SN child was like booking a holiday to France but ending up in Italy. You still get a lovely holiday just not the one you planned.

Good luck coming to you at this difficult time x

SingingMummy · 23/09/2010 20:46

Dear OP
I'm sorry I don't have time to write much now but I just had to reply to your post.
I feel for you so much at this difficult time, and I hope you and your DH are able to resolve together what to do.

I just wanted to tell you about my little girl who has DS. She is an absolute darling - she is cute, cheeky, funny and lights up all our lives. She goes to mainstream nursery, and the other day the head teacher said to me how much they enjoy having her there - she said "you are so lucky to have her." And I really honestly feel that I am.

When we found out that she had DS it was a truly horrific experience - the blackest day of my life. And yet I look at her now and think how could I ever have felt like that?

Without doubt, it is much harder work having a child with SN than an NT child, and there are definitely days when I'm tired and have a million things to do and I have a "why me" moment. But I wouldn't change things now - I really feel DD has made me a better, nicer person, with a kinder more accepting outlook on life.

I suggest you get in touch with the DOwn's Syndrome Association and your local support groups,who I'm sure will be happy to help you. All I would say is whatever decision you do make, please make it based on up to date information about what life is like with a child with DS - and not on stereotypical outdated assumptions which are so often, even now, peddled by the media.

BTW I also have an adorable DS who loves his little sister and she adores him. His life is not restricted by her in any way.

adriennemole · 23/09/2010 22:09

Hi Remembertoplay,
Don't know if you remember me from your thead on antenatal tests/choices but I found out my DS had down's and a heart problem half way through my pregnancy.
I could write pages about how we prepared for his arrival and the mixed emotions along the way aswell as life as a family now he is here.
If you want to contact me I would be happy for you to do so through personal messages (shiny new mumsnet service) or you can ask me anything on here. I would be happy to talk as I myself would have found it a huge help to have spoken to someone who found out postnally whilst pregnant.
There is some great advice on here and some really honest and lovely stories it's always interesting to have a glimpse as to what the future might hold for my DS (Reading stories from those with older DC) but for now we're taking each day as it comes and still getting to know the happy, cheeky and determined little person that is emerging.
The turmoil, the sense of loss and dark places I went to all those months ago are now a distant memory.

RememberToPlaywiththeKids · 24/09/2010 20:37

Thank you so much for all your replies and thoughts and I am learning so much from them and have found myself in a place where I think i do actually truely understand what you are saying.

One thing that has happened today is that I looked at the US report again and found that along with the VSD, they also put suspected overriding aorta.

This has got me in to a real state because now it's all leaning towards tetralogy of fallot which is a different kettle of fish to a VSD.

DH has said that if this pregnancy doesn't work out for whatever reason then he won't want to try again. He didn't initially want a 3rd DC but went for it for my sake and after DC2, I had a MMC and then another MC and now all of this.

I am so worried that this baby has something too complicated to warrant continuing for it's sake as I'm not sure I can bring a child in to the world that needs lots of heart ops and still have a poor prognosis. To watch a child go through the pain and the fear would shatter my heart. So now I'm worried that is the case, that I will have to deal with a termination (which terrifies me) and that I will have gone through 2 MCs and this situation and all for nothing.

I would be so happy if it all works out with this baby and the cardiac defects get sorted early and easily.

adriennemole thank you so much and yes I do remember you - do you mind me asking what heart defect your gorgeous DS was diagnosed with and what was done about it and when etc? I'm not sure how to use the personal message thing. I can find out...

OP posts:
devientenigma · 24/09/2010 20:55

Hi remembertoplay,
My son has tetraology of fallot. It's a condiditon that isn't repaired but allieviated. So far my son has had 2 open heart surgeries and yes a future surgery is planned. He is now nearly 10. HTH x

RememberToPlaywiththeKids · 24/09/2010 21:17

Thank you for replying - can I ask what the medics say about it in terms of seriousness etc? When was he diagnosed and how is he? You have all been through alot.

OP posts:
devientenigma · 24/09/2010 21:23

He was diagnosed shortly after birth, then later dx with down syndrome.
I can let you know what life has been like from the heart point of view, though like you say it's a different kettle of fish.
Do you feel up to it as you are going through a lot yourself!!??

RememberToPlaywiththeKids · 24/09/2010 21:28

Yes if you feel able to tell me - I need to know incase they diagnose it at my next scan in 10 days time. It's being done by a cardiac person from great ormond street hospital. Can i ask you a dreadful question and one you probably can't answer - knowing what you know would you think seriously about termination if it was diagnosed at 22 weeks?

OP posts:
devientenigma · 24/09/2010 21:39

Sorry I can't answer the question for you, it's something you have to decide by weighing up all your pros and cons.
I know 10 days seems like a long way off, would you not want to know more of our experiences after you find out what heart condition it could be??
I don't mind discussing my son and any of his issues, it's just sometimes a lot to take on board for some people. I just feel you are going through the mill at the mo. xx

WantageWife · 24/09/2010 22:34

Hi! Just a quickie... glass of wine calling as my girls are in bed!!

My DD2 was born 3 months ago and we got a confirmation that she had DS a few minutes after she was born - actually, I spotted it before the midwife did!! I had had a "high risk" triple test (1 in 110) but refused the amnio as we wouldn't have terminated regardless. I kind of "knew" anyway and read up about Downs for the remainder of my pregnancy.

Anyway, life is great!! My baby is gorgeous and such a poppet. I never went into parenting to create a perfect carbon copy of myself (or my husband!). We always knew we would take what we were given. We have no expectations, our girls will develop at their own rate and we hope they will live their lives on their own terms. All we want is for them to know how much they are loved, and the rest is up to them. Life (so far) is no harder than it was with DD1. In fact, I think having a "special" baby after having a "typical" baby is easier as you have already had some parenting practice.

Yes, there will be some extra intervention for DD2, but s wise lady said to me after DD2 was born "the biggest mistake you will make is treating her any differently to your DD1", and we wont. We focus on the positives, our children are here, and we love them.

As for your husband... copy this thread, copy your worries down, and in 3 years time, bring it out and remind him how he felt... last laugh will be on you as he bows his head in shame... there is NO WAY he will will love his child with DS and less than his other kids!! In fact, he will love him/her a little more... there is a little miracle waiting to happen in your lives, enjoy it xxx

adriennemole · 24/09/2010 22:59

Hello again, My DS was diagnosed with an AVSD by a cardiac specialist from GOSH. I was 19 weeks pregnant at the time and my DH and I had both agreed that if it was very serious or untreatable we would not continue the pregnancy.
As it turned out the consultant was very positive in regards to surgery and recovery and he had his operation at 4 months old.

Those months before surgery were very hard, he was tube fed from about 8 weeks and was very weak and underweight. We were at the hospital at least once a week sometimes twice and the surgery itself aswell as time in ICU was pretty scary there was also a complication which prolonged our stay and meant further treatment once home.

There were further checks throughout the year and at his last check we we're told he wouldn't need to be seen again for 3 years and the surgery had been a great success which was a huge relief and meant we could concentrate on his development and seeing him grow in to a happy, healthy toddler.
Good luck at your next scan and keep talking and asking questions when you need to.