Parents rejecting their special child

Angelmum

Moderator
Was requested to write an article for Today's Motherhood about my baby, hope it creates more awareness.

Copied this from another thread
Thanks all for your recommendations.

I've decided to see a senior consultant from the Kandang Kerbau Hospital Maternal Fetal Medicine Dept, after asking someone who works there. This dept specialises in high risk cases. Out of the 40 gynaes at Kandang Kerbau Hospital, only 5 do the amnio, cos they are highly experienced.

For mummies like me who have previous baby with multiple genetic condition, it's recommended to go to govt hospital, either NUH or Kandang Kerbau Hospital.

I decided not to go to a pte hospital first. Wanna make sure things are ok first. If now go pte hospital, if there's any complications found, they'll most likely ask you to go to Kandang Kerbau Hospital or NUH for their expertise and facilities, so you'll be back to govt hospital anyway.

Anyone keen to get some names of gynaes in the Maternal Fetal Medicine Dept can pm me.
 

shiseru

Member
Why must God put us through such tough ordeal? I too lost my baby at 20 weeks last month becoz baby diagnosed spinal bifina
- http://www.mummysg.com/forums/f33/hear-my-story-19281/

I was with KK but at TPS which is consider under private. During the 20 weeks scan, when we were told baby has spinal bifina, we seek 2nd opinion with Ann Tan at Paragon. She pointed out the defect to us and did a detail explanation, becoz of her high tech scan machine we see it clearly and confirmed that the defect was severe. If we choose to bring her into this world, she will suffer and her quality of life will be compromise. KK NEVER showed us the defect, only told us verbally baby spine got problem, will affect bowel system and brain, baby abnormal, that's all! How can we be convinced??​

It was so painful, but we know we have to end the pregnancy. I cried and cried harder when my baby kicked and punched in my womb, as though she was protesting our decision...​

I was induced 5 times, took 18 hours before i delivered the fetus. It was a painful labour without rewards, i have no baby to carry home. I choose a single bed ward becoz i dont want to be with other mummies. I received alot of support from the midwives, nurses and my gyane, Dr KT Tan. My placenta was out completely so i did not go for D&C, & my doctor cleared all my blood clot so i did not experience cramp. Dr Tan has done a good job, in fact she is a good gynae, too bad she doesn't do all the scanning herself.​

I become very reserved after this incident, I dont't like crowds coz I cry when i see babies, I dont't like talking to people. I am in depression but i know i have to overcome this. I also heard Prof Biswas specializes in high risk pregnancies, people refer him as he is supposed to have the "midas touch"

Ann Tan at Paragon is good, she is the one that brought in the Oscars test. Her scan machine is very high tech & very clear, 3D and 4D combine but she is VERY costly.​
 
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gzifa

Member
My heart goes out to u. I've been in your shoes, just 5 months ago. I've nv stopped hurting, not even for a day.

Do you have any other children? As for me, I don't. People keep saying it's possible to have another, etc. Although we're looking for gynaes and all, we're both terrified. At times, I think he's more scared than I am.

I've never lost a loved one close to me before either, this was my first. Probably why I took the downfall very hard. I too, avoid crowds, try not to be around children, and the sight of pregnant mommies or parents with newborns make me heart ache.

It will subside though, the feelings are getting less chokey. While we'll never forget our babies, we will soon be able to 'function normally' again.
 

shiseru

Member
My heart goes out to you. I've been in your shoes, just 5 months ago. I've never stopped hurting, not even for a day.

Do you have any other children? As for me, I dont't. People keep saying it's possible to have another, etc. Although we're looking for gynaes and all, we're both terrified. At times, I think he's more scared than I am.

I've never lost a loved one close to me before either, this was my first. Probably why I took the downfall very hard. I too, avoid crowds, try not to be around children, and the sight of pregnant mommies or parents with newborns make me heart ache.

It will subside though, the feelings are getting less chokey. While we'll never forget our babies, we will soon be able to 'function normally' again.
My situation is same as you, gzifa. That is my first pregnancy after our 12 years of marraige. God gave us a surprise but it was short-live, he took it away again. I've never lost a loved one close to me before either.

It must be terrible, espcially when you were already at your third trimester. Why didnt they detect the defect earlier so you would not have to drag the pregnancy till the 3rd trimester?

I believed for my case and jasobias, they should be able to detect during the FTS (first trimester screening) but sometimes government hospitals are too systematic. During 11-14 weeks of pregnancy, they scan for down symdrome (the fliud behind the neck, nasal bone), nothing more. 20 weeks they will then check the baby's organs, spine, heart, kidneys, etc. Unlike private, they usually check everything during each scan.

I am 35 this year, so it's best i look for a gynae specializes in high risk pregnancy, I know Prof Biswas fom NUH is one of them, another one is Ann Tan, or probably Paul Tseng (Thomson Medical Center)

Yes, time will slowly heal our wounds, but we will always remember our babies. We will overcome this & it will bring us and our husband even closer together.
 

Ashbaby

Active Member
Pat Pat to all the mummies who lose the battle to fate.

Actually its a tough decision to make to terminate the BB, ur BB is with angel now, cheer up!!!
 
shiseru,

just wanna share that i believe God puts us through tough ordeals to make us stronger. I also believe that he does not give us what he thinks we can't handle.

God gave me a baby with multiple genetic abnormalities. But now I realise he knew after the harrowing beginning months - I was in post natal depression too- I will be able to manage it. He also gave me ANOTHER baby at the start of this year 2009 - possibly with genetic abnormalities as well - but took her away after 8 weeks - because he knew I couldn't possibly cope with another special needs baby. And it's true at that time I was have an uphill struggle coping with caring for Vera and work and very unstable emotionally.

There are people who choose to give birth to severely disabled children. But depending on the severity of the disability, that can drive them into depression and withdraw from society as well. I think it take helluva lot of mental strength to bring up such children who can really wear down the strongest marriages.

Hope you will come to accept that God has his reasons although they may not be immediately clear. I am not a Christian though, but this whole preg episode has shown me that there is higher force working on us...so I don't fight with myself so much anymore when things go a different way.

I will one day lose Vera as well, her life expectancy is anywhere before her teens. Everyone has their "task" from God...I guess this is mine. Losing a baby or child must be more painful than anything in the world...

I got help listening to the song "HOLD ON" from Wilson Phillips in my darkest hour - perhaps it might help you.
 

gzifa

Member
I still don't know why didn't the gynaes detect the abnormalities till the 22nd week, or why KKH couldn't tell me what was wrong, until I visited a private hosp gynae.

No point pondering over them anymore either I suppose. I'm glad you've decided to try again. My aunt (many years ago) had the same problem. Except hers was never detected, and days before her due date, she could smell something rotten coming from within her, and she knew something was wrong. It was only them the hosp realised the baby was sick and dying. Years later, in her late-30s, she gave birth to a healthy baby girl, and later in her mid-40s, another healthy baby girl.

With such miracles happening everywhere, we'll pray and believe we'll receive ours too, soon. =)

It must be terrible, espcially when you were already at your third trimester. Why didnt they detect the defect earlier so you would not have to drag the pregnancy till the 3rd trimester?

Yes, time will slowly heal our wounds, but we will always remember our babies. We will overcome this & it will bring us and our husband even closer together.
 

shiseru

Member
shiseru,

just wanna share that i believe God puts us through tough ordeals to make us stronger. I also believe that he does not give us what he thinks we can't handle.
I salute you, yummymummy. I read your blog and it gives me strength and let me understand how great a mother can be. Taking care of a normal child is already not easy, not to mention one with a special need. Vera 很幸福 and very blessed to have a wonderful mummy like you.

The next pregnancy, I will probably go to Prof Biswas. I will likely request an amniocentesis. I know there are 1% risk of miscarriage but amnio can detect nearly all chromosomal disorders as well as Neural tube defects such as spina bifida and anencephaly. Also, I heard Prof Biswas is Singapore's #1 Amniotic Fluid test Gynae.

Nowdays, in addition to supplement and multi-vitamins, I take food that contains lotsa folic, veggie especially broccoli, fruits such as oranges. I go back to exercise 3x per week. My first menses after my m/c came last week, I am so happy! I am tempted to try to conceive but I am scare, so I think I will just let nature takes its course. And, it's been 8 months since we :we2Randy-git:, oh my poor hubby.
 

sushigal

Member
Just like to share this poem which will not fail to touch my heart whenever I read it:

"A meeting was held quite far from earth...
'It's time again for another birth...'
Said the angels to the Lord above,
'This special child will need much love'...

His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there...

He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped

So let's be careful where he's sent
We want his life to be content
Please Lord find the parents who will do
A special Job for you...

They will not realise straight away
The leading role they're asked to play
But with this special child sent from above
Comes stronger faith and richer love...

And soon they'll know
The priviledge given in caring for this
Gift from Heaven
This precious charge so meek and mild
Is heaven's very special child...

(Author, unknown)

A christian I'm not but I truly 'endorse' this reading very close to heart... hope you all find special meaning in it as well...

Hi susinlim, thanks for the poem that touches my heart greatly. Tear roll down my cheek while reading it word by word.
 

xiaochuan

Member
My personal thots: Would one rather a special child be born to this world to suffer or have the child leave this world to be reborn as a healthy bb in another life?

I share Angelmum's sentiments. If born already then detect the abnormality, no choice but to make the best out of the situation. But if not born yet, unless parents are geared up financially and emotionally, it would be better for everyone to let the child go.

Rejecting a special needs child is but human. (i am not saying it's ethically rite)
Our society is not "educated" enough in this aspect to tolerate impairments. The many pains n sacrifices that family have to make to support a special needs child....
I didnt feel this until it happened to me....
 

epicurean

Member
My personal take is things happen for a reason. In Seb's case, I still don't understand why things happened to him the way they did (the severity and extent of his multiple disabilities).

But what I've seen is that he's an instrumental of faith and grace coz he has changed the lives of those who come in contact with him in how they choose to respond to him. Some members of the family still reject and treat him like some alien life form. Then I see my dad who's the typical conservative Asian dad who doesn't show affection and usually leaves child-rearing to mum ... yet he carries and pacifies Seb so patiently that now they share a close grandpa & grandson bond. During a seizure episode one night, he stayed up all night carrying Seb to comfort him after the trauma.

Yes, there're a lot of sacrifices, pains and hardship in looking after a special needs child, be it giving up idealised dreams of a healthy, normal child, moderating expectations about family life & lifestyle, emotional struggles, physical & mental fatigue, financial expenses. Yet every small victory is very very sweet - every wiggle of his fingers & toes as he tries to hold something, the way he focuses his eyes on me as I make faces at him, every effort he makes to swallow his puree, clear his phlegm or hold up his head, every laugh and smile when I succeed in tickling him.

Yes society will deem him as useless and a burden who can't contribute in any way coz he's so impaired. In our world, he's walking a vastly different path from mainstream society and hubby & I will walk with him as far as we can and make contingency plans thereafter, so that he knows that he's never alone and he's ever well-loved.
 

Ting

Well-Known Member
i second tt.
it takes great courage to hv a child with disabilities.
its not easy.. n not everyone hv the courage to take up this role n responsibility.
as for the parents, some of them can get depress.
i used to hv a neighbour who lives below my unit.
as my hse lift doesnt stop at every level, they hv to pass by my hse everyday..
i get very scared of her son, cos he is mildly retarded..
he will go up very close to u n shout suddenly..
more worry cos i hv pin with me...
n once in the lift, i saw him poke another girl's breast b4 his mum can stop him..
he is in sec sch if i m not wrong..
i really pity his mum, she has to be with him 24/7 n everyday she is screamin n shouting at him.. cos he will do losta funny things..
like press on our hse doorbell, take our slipper n throw down the stairs, bang on our door..
but i also admire her courage to live in a coloured lens society.
i dunno how long i can hang on there if i were to be her..
 

xiaochuan

Member
Epicurean and Yummymummy,

I drew strength from you both. Each time i feel down and out, i think of what u both are dealing with, esp epicurean... always postive and rational. I know i am not alone although my gal's case seem to be the worst.

Each time i have those negative thots/ really upset, i read the forum posts again n again to remind myself that if other mummy can do it, i can do it for my child too.

Ladies, i m happy to take a step fwd today. I requested a referral to put my child in EIPIC. I want her to start as early as possible. Though her case is low functioning high dependency, i do want her to move a bit more to functioning. Eventually, she may be able to go on wheelchair instead of bed ridden? Miracles do happen rite? That would certainly be the best thing to happen. This is what i can do for my gal at the very least.

Feelings of rejection lingers and revisit me each nite... and i am fighting hard to stop feeling this way.
 

Angelmum

Moderator
Ladies, i m happy to take a step fwd today. I requested a referral to put my child in EIPIC. I want her to start as early as possible. Though her case is low functioning high dependency, i do want her to move a bit more to functioning. Eventually, she may be able to go on wheelchair instead of bed ridden? Miracles do happen rite? That would certainly be the best thing to happen. This is what i can do for my gal at the very least.

Feelings of rejection lingers and revisit me each nite... and i am fighting hard to stop feeling this way.
 

jojoki

Well-Known Member
Epicurean and Yummymummy,

I drew strength from you both. Each time i feel down and out, i think of what you both are dealing with, esp epicurean... always postive and rational. I know i am not alone although my gal's case seem to be the worst.

Each time i have those negative thots/ really upset, i read the forum posts again n again to remind myself that if other mummy can do it, i can do it for my child too.

Ladies, i m happy to take a step fwd today. I requested a referral to put my child in EIPIC. I want her to start as early as possible. Though her case is low functioning high dependency, i do want her to move a bit more to functioning. Eventually, she may be able to go on wheelchair instead of bed ridden? Miracles do happen rite? That would certainly be the best thing to happen. This is what i can do for my gal at the very least.

Feelings of rejection lingers and revisit me each nite... and i am fighting hard to stop feeling this way.
so happy of ur decision, n ur effort. yes MIRACLEs do happen...! Gambate!
 
Epicurean and Yummymummy,

I drew strength from you both. Each time i feel down and out, i think of what you both are dealing with, esp epicurean... always postive and rational. I know i am not alone although my gal's case seem to be the worst.

Each time i have those negative thots/ really upset, i read the forum posts again n again to remind myself that if other mummy can do it, i can do it for my child too.

Ladies, i m happy to take a step fwd today. I requested a referral to put my child in EIPIC. I want her to start as early as possible. Though her case is low functioning high dependency, i do want her to move a bit more to functioning. Eventually, she may be able to go on wheelchair instead of bed ridden? Miracles do happen rite? That would certainly be the best thing to happen. This is what i can do for my gal at the very least.

Feelings of rejection lingers and revisit me each nite... and i am fighting hard to stop feeling this way.
I'm glad you're giving your gal a chance. Every one of us, deserves a chance to show what we're made of in life.

I just want you to know that feelings of rejection are VERY NORMAL. Do not fight it - accept your feelings of rejection and let it run its course - because the only way out of it, is through it.

Give yourself time - you're doing great just talking about how you feel - we all need self-therapy before we can give our kids any therapy!
 

candy_ian

Active Member
after reading the posts i really salute the parents with Special needs. I get tired sometimes looking after my son n seeing the posts i felt guilty cos my effort seems so little compared to u guys. This society is not able to accept ppl with special needs with their arms wide open yet. but at times reactions frm those little angels that the society neglects r the sweetest n most touching to the hearts which ppl never get to see unless they open up to them.. Btw i can understand costs of equipment r high, i may b able to get disc rates frm suppliers if any help arise. Though i've left my job as a nurse but i'm still in contact with most of them. Would b glad if of any help.
Keep going for all the brave mummies out there.
 

xiaochuan

Member
Hi everyone,

Thanks for your encouragement. I m trying my very best!

Like i said, each syringe of milk, each suctioning.. each time i face the child, mixed feelings come about.

Each morning, i wake up to the stark reality that my child has a condition. It's a tough fact to swallow. I hope to find someone whose child got the same condition to walk this journey with (not that i am cursing anyone). I have no clue at all how much time it will take for acceptance to set in... it's a constant FEAR of how my gal will become in time to come as she grows. Will her limbs be deformed? Will she ever be able to swallow, what if she cant? Or even "when can my life be reset"... how will life be if she grows and and no one can carry her anymore? Lay in bed for good? ...

Each nite, the vivid scenes of what happened in labour suite all the way to getting prognosis from my child's MRI scan juz bugs me. I can visualize so clearly! : ((
I think n think until i dropped into sleep due to fatigue.
 

uddermummy

Well-Known Member
hi xiaochuan, add oil! Another step forward!

Epicuren, special angels like Seb are God's way of showing us beauty, compassion, and unconditional love in imperfections. Society may see them as useless, but plebians are plebians lohhh... Ignorant in the safety of the herd mentality.
 
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