Accepting my own Gal

[Yvonne Lim]

Dear All,

I am a mum of 2, my 2nd daughter was born 16 days ago on 2 Jan... Like any parents we are so excited waiting for the arrival of our little princess, our elder gal is also excited waiting for the arrival of her little mei mei...

Finally I deliver my gal on 2 Jan, but our joy was short-lived... On the 2nd day the PD came to us to say that he need to do a chromosones test for our little gal cos she hv sutle signs of chromosones dis-order.. at that moment, I didnt expect that mean Down Syndrome.. I have done the OSCAR test and my ratio is 1 : 2100 and my detail scan shown all measurement to be normal too.. Even my gynea was surprise that the PD ask us to do a chromosones test and she say my gal looks perfectly fine.. but to our horror we found out that my little gal have DS a week later, she is diagonise with Trisomy 21..

I went hysterical and kept crying, I cant even carry her or look at her during the first week, last week (th 2nd week) we seek help with the DSA and spoke to the kind people there, I feel much better therafter.. However my mood and emotions still went up and down like roller coaster..

I have so many fears, uncertaintly, worries about the future..

Can some parents with DS child give me some advise and help...

 

[Ting]

hi sorry to hear that, as a mother myself, i do empathise n can understand how u feel.
though my girl do not hv Down syndrome, but as a parent we all hope that our kids will be healthy..
it is hard to accept, but life is such, n such is life.
be strong, for yourself n your precious little one.

 

[apollo]

Yvonne, my heart goes to u. i dunno what to say to make u feel better.

taking care of a D.syndrome baby needs lotsa patience. so at the meantime, u must take good care of urself.

i dun really hav a religion but i still will pray for u and ur baby girl =)

 

[Angelmum]

... On the 2nd day the pediatrician came to us to say that he need to do a chromosones test for our little gal cos she have sutle signs of chromosones this-order.. at that moment, I didnt expect that mean Down Syndrome.. I have done the OSCAR test and my ratio is 1 : 2100 and my detail scan shown all measurement to be normal too.. Even my gynea was surprise that the pediatrician ask us to do a chromosones test and she say my gal looks perfectly fine.. but to our horror we found out that my little gal have dear son a week later, she is diagonise with Trisomy 21..

OSCAR, or One-stop Clinic for Assessment of Risk for Fetal Anomalies is a combination test offered in the first trimester to screen for risk of fetal anomalies, in particular Down Syndrome (Trisomy 21). I'm really surprised such an 'error' could occur. D.S. cant be suddenly, it can be diagnosed b4 the child is born. I can understand the feeling of 'playing safe' (went for test) yet being 'played out'. R u able to find out is it human error for not being diagnosed early?

I suppose u were not recommended amniocentesis which will give you a definite diagnosis as u r below 35 yrs old when pregnant?

Have a good confinement and pls dont give up hope. Some D.S. r really smart.

 

[littlehelper]

Hi i guess i won't be able to completely understand how u feel but hope you will be able to come to terms with it.
I m sure with proper guidance your child will turn out fine.
Just to encourage you, there is a girl in my sch who is diagnosed with Down Syndrome but even then, she managed to get in my secondary school and is getting along well and fine with her classmates.
She has also brought lots of joy to her friends and teaching them lots of stuff indirectly like patience,care and concern and many more.
Hope you will be strong.

 

[stonston]

Down's syndrome is not the end. It's start of a wonderful life. Because of your girls condition, you'll get to see the real innocent side of kids. No pretences, no manipulation.

I've worked with D.S. children before and I love them alot! There are high functioning and some with rather high intelligence too! They show true love without expecting to gain anything.

Accepting your child may not be easy but you'll soon learn to love her and will want to always be there for her.

Anyway, since it's only subtle signs, it could be very mild and you'll have loads of fun with your new bundle of joy

 

[stonston]

BTW, I know looking after a newborn is not easy. If you have time to read to relax, try this book "Red Sky in the Morning". It's about how a family went through bringing up a baby with hydrocephelus.

 

[Yvonne Lim]

Hi Angelmum,

You are right, I am very upset with my gynea, she did not suggest to me amniocentesis. During my detailed scan (20 weeks) they found a Choroid plecus cysts in the BB brain and my gynea did explain to me it may cause bb to hv down but based on my oscar result she ask me not to worry and ask me to go for another A3 scan (A more detailed scan by the head of fetal assessment) 2 weeks later to be safe but she did not offer me to go for amniocentesis.. Taking her advise as she is the professional, i went for the A3 scan and in the end the cyst dissolve by it self so she told me BB will be ok and all this while she kept assuring me BB will be fine..

In the end in turn out this way.. I seriously can't accept the fact...

My mood is like a roller coaster ride going up and down and kept crying, when I sleep I will hv nightmare or wake up in the middle of the night thinking again and again...

 

[Yvonne Lim]

Thank you all mummies who reply and your encouragement.. I seriously hope she will be fine.. The cardiac scan shown that she hv 2 holes in her heart and her duct is not close, i pray tat the holes and duct will be closed by itself so she don hv to go thru any surgery....

 

[littlehelper]

*Hugs* We will keep praying for her.
Be strong cos she needs u there to keep her going.

 

[Yvonne Lim]

*Hugs* We will keep praying for her.
Be strong cos she needs you there to keep her going.

Thanks little helper, I really hope she don hv to go thru the heart ops at such a young age.. she is such a poor little gal, a mum who is trying to accept her (really hate myself for this, and hv to go thru DS the rest of her life and her health which may be affected bcos of DS..

 

[epicurean]

Hi Yvonne,

First of all, please know that you're not alone with your roller-coaster mix of emotions. The parents in this forum with special needs kiddos have all been on the same road you're on now ... with that crazy mix of anxiety, anger, grief, frustration, fear, incomprehension, worry. Yes your moods will fluctuate as you work your way thru your emotions, so be patient & gentle with yourself. I cried buckets & buckets during the early days of finding out about my boy's condition.

Some food for thought ... your gal is, first, your daughter. She is, second, your child with Down Syndrome. Try to see your child beyond the disability for she is precious & sweet. There'll be moments when the disability is all you can see and you'll grieve for the child she might have been. But over time, those moments will be more infrequent as your gal's personality, character, will and spirit outshine her disability.

What all the mummies have been advising you is so true ... you need to take VERY good care of yourself and recover well during your confinement. This will really help with the acceptance process and tackling whatever issues that your gal may need to handle. Try not to think too much about the future ... the future will come by itself and come soon enough. Do what you need to do at the moment. Please know that there're a lot of people (med personnel, therapist, healthcare personnel etc) out there who can & will help you ... there's also a community of parents with Down Syndrome kids and other special needs kids to support you ... and there's us

 

[Yvonne Lim]

Hi Yvonne,

First of all, please know that you're not alone with your roller-coaster mix of emotions. The parents in this forum with special needs kiddos have all been on the same road you're on now ... with that crazy mix of anxiety, anger, grief, frustration, fear, incomprehension, worry. Yes your moods will fluctuate as you work your way thru your emotions, so be patient & gentle with yourself. I cried buckets & buckets during the early days of finding out about my boy's condition.

Some food for thought ... your gal is, first, your daughter. She is, second, your child with Down Syndrome. Try to see your child beyond the disability for she is precious & sweet. There'll be moments when the disability is all you can see and you'll grieve for the child she might have been. But over time, those moments will be more infrequent as your gal's personality, character, will and spirit outshine her disability.

What all the mummies have been advising you is so true ... you need to take VERY good care of yourself and recover well during your confinement. This will really help with the acceptance process and tackling whatever issues that your gal may need to handle. Try not to think too much about the future ... the future will come by itself and come soon enough. Do what you need to do at the moment. Please know that there're a lot of people (med personnel, therapist, healthcare personnel etc) out there who can & will help you ... there's also a community of parents with Down Syndrome kids and other special needs kids to support you ... and there's us

Hi Epicurean,

Appreciate your reply, may I ask wat's your son condition?

I am trying daily to be stronger bit by bit and love her more and more but is not easy my dear, it pain me to see her not being the little princess i hv been dreaming of, pain me to see her health affected, feel guilty to bring her to this world to suffer......

 

[littlehelper]

Its definitely not easy but its a good start to try to be strong and slowly accept her.
I m sure through this period of trials there might be many down sides but there will be definitely joyful moments you will remember for your live and everyday would become better.

 

[Ashbaby]

Im sorry to hear this, it maybe a great shock to you, pls find strength in GOD and have faith.

DS was detected with facial defects during wk 20 detailed scanned, Im equally shocked as my family do not have the history. My amnio test was normal, and defects can be corrected thru surgery. It took me quite sometime to accept it too. I believe that if God give you this baby, God know that you have this capabilities to nurture this baby.

It will definitely tk some time for you to settle down, be patience with yourself, most impt find support. Which I think is very impt, my family and friends is really supportive despite knowing DS situation.

 

[epicurean]

Yvonne,

My boy has cerebral palsy (severe brain damage), quadriplegia spastic (no or little control over all his 4 limbs & trunk), epilepsy (with on-going sub-clinical seizures in his brain), GERD (acid reflux), hypertonia (excessively stiff muscles), scoliosis, possible hip dislocation (we're racing against time to prevent or minimise it), microcephaly (smaller than normal brain size & circumference) and global developmental delay. He's non-mobile & non-verbal, completely dependent on us but has his own way of expressing his needs & communicating them to us. I'm thankful that he's 'expressive' that way with a feisty spirit plus that he feeds orally & breathes unaided. And that he has a cheeky smile and gorgeous hair :001_302:

Yes it's not easy ... in fact, it's very tough, heart-wenching, painful & agonising to come to terms with your gal's condition & give up your idealised dream of your little princess. For me, it took months.

 

[Yvonne Lim]

Im sorry to hear this, it maybe a great shock to you, pls find strength in GOD and have faith.

dear son was detected with facial defects during wk 20 detailed scanned, Im equally shocked as my family do not have the history. My amnio test was normal, and defects can be corrected thru surgery. It took me quite sometime to accept it too. I believe that if God give you this baby, God know that you have this capabilities to nurture this baby.

It will definitely tk some time for you to settle down, be patience with yourself, most impt find support. Which I think is very impt, my family and friends is really supportive despite knowing dear son situation.

Hi Ashbaby,

May I know if u hv a gal or a boy and how old is yr child? U mean u did amnio test and they can't detect tat yr BB have DS?

Yvonne

 

[Yvonne Lim]

Yvonne,

My boy has cerebral palsy (severe brain damage), quadriplegia spastic (no or little control over all his 4 limbs & trunk), epilepsy (with on-going sub-clinical seizures in his brain), GERD (acid reflux), hypertonia (excessively stiff muscles), scoliosis, possible hip dislocation (we're racing against time to prevent or minimise it), microcephaly (smaller than normal brain size & circumference) and global developmental delay. He's non-mobile & non-verbal, completely dependent on us but has his own way of expressing his needs & communicating them to us. I'm thankful that he's 'expressive' that way with a feisty spirit plus that he feeds orally & breathes unaided. And that he has a cheeky smile and gorgeous hair :001_302:

Yes it's not easy ... in fact, it's very tough, heart-wenching, painful & agonising to come to terms with your gal's condition & give up your idealised dream of your little princess. For me, it took months.

epicurean, you know wat, you are so strong, you make me realise that I am not alone and if your son condition you are still so much stronger than me.. I hope one day I can be like you...

I pray that god watch after your son and pray tat all the illness will be minimise...

Is he your only child? R u a working mum?

Love
Yvonne

 

[Ashbaby]

Hi Ashbaby,

May I know if you have a gal or a boy and how old is your child? you mean you did amnio test and they can't detect that your baby have dear son?

Yvonne

Mine is a boy. Nope my boy amnio result is normal. Defect was found during the WK20 scan. Tks god we found it earlier, we manage to speak to a team of specialist, so when boy is out we will proceed with treatment and follow by surgery.

 

[epicurean]

Yvonne,

Thanks but I'm not particularly strong lah ... I just do what needs to be done and try to make my boy as happy as he can be each day coz we've been warned that he's not likely to outlive us. I've gotten to know & have met other parents with special needs kiddos who are in more challenging situations than Seb ... they need the aid of a trach & oxygen to breathe, have med pumps attached to their wheelchairs, undergo high-risk surgeries etc ... it's humbling to see how they go about their lives with such love, grace and good cheer.

Yes, Seb is my first and only child. I'm a part-time working mum ... this arrangement helps to supplement family income plus enables me to bring him for his med reviews, therapy sessions etc.

Thanks for your prayers ... very sweet of you Since his PICU days, we've asked relatives & friends of all faiths to pray for him ... every bit helps and he has come a long long way since those scary early days.

Keeping you, your gal & family in my thoughts & prayers ...