Does Your Child have a Congenital Defect?

[golden]

^It really is sad but God has a purpose for it. As for my daughter naman, this is what we notice, her weight gain is too slow. We tried a lot of formula milk pero lahat, pare-pareho ang effect kay baby. She's already 10 months old and she still doesn't know how to crawl (probably because of the condition of her left hand). Di pa rin sya marunong umupo by herself. I am now starting to worry but I keep on praying to God na sana, okay si baby ko. Lagi ko pa rin kasi naaalala yung sinabi sa akin ng isang orthopedia na baka may kasama pang iba yung sakit ni baby sa left hand nya. He told me na most of the time may kakambal daw yun na isa pang abnormality. I keep on watching out for any sign which will tell me if my baby has other problems pa.

[marose17]

^ Sis golden, why don't you explore the possibility of starting physical therapy for your baby?  My Milo started crawling very late (unlike his twin) and he greatly benefited from the weekly PT sessions which their developmental pedia recommended.  After 3 months of PT, naka-walk na siya.

[golden]

^Sis, ipapaphysical therapy na sana namin noon si baby nung 6 months sya pero sabi nung orthopedia na nakausap namin, no need na daw. Kasi inborn daw yung sa left hand ni baby (her left hand doesn't have a thumb and hindi straight ang left hand nya, medyo nakatiklop inwards) and yung baby ko na daw mismo kasi ang magaadjust.

[marose17]

^ Perhaps it was too early for your baby to have PT when he was 6 mos old pero now, baka puwede para lang ma-jumpstart yung motor skills development niya.  Yung pedia kasi namin is of the belief that the earlier the intervention, the better for the child. 

Ask mo na lang sa doctor ulit or get a 2nd opinion.  Mas maigi kung pedia-ortho, not just a regular ortho.  IMO lang ha.

[golden]

^Sis, pedia-ortho po yung pinagtanungan namin. Sige po, try namin humingi ng second opinion. Thanks!

[mitchoy]

^ sis golden, my son's case is worse than your baby but he started crawling when he was 7 months old and can stand by himself when he was 8 months old as far as i remember.  siguro hindi yung hand niya ang reason kaya hindi pa siya nakakapag-crawl.

ganyan din sabi sakin ng mga doctors, sa mga ABS cases usually daw may isa pang abnormality. when he got hospitalized because of uti, they checked his kidney and liver baka kasi may problema din daw.  sa awa naman ng diyos, wala.  so far yung left arm and eyes ang may defects and under treatment.  sana talaga wala ng sumunod 

[koi1028]

ang nakakalungkot is yung kaya natin sila protektahan until bata sila pero when they explore the world na dapat tayo ang mga unagn fans nila para hindi sila maintimidate sa ibang tao.. strength for us.. God's grace and prayers...

Second opinion na rin mommy for your kid.. iba iba din kasi ang mga practices, try din surfing the net...

[ebiko]

so far, my baby doesn't have any birth defects but my nephew has

premature @ 7 months, kasi nag-pre-eclampsia ang mother (she's a nurse and yet, hindi man lang niya binigyan ng pansin na may high blood pala siya) ... chances are my birth defect daw ang baby kapag ganon ang naging situation, and true enough, my defect nga yung bata, yung sa organ niya, hindi fully developed yung scrotum, parang hindi yung katulad sa normal na naka-hang, yung sa kanya, parang nka-paste lang, then may ADHD yung bata, at in-denial silang mag-asawa. they perceived their son to be normal, pero hindi. my cousin is a nurse, and she said, nothing is wrong with her son, mabagal lang ang development, yung sa organ daw, kailangan lang ng operation, kaya nag-abroad ang mother para maka-ipon para sa pag-papagamot.

now the boy is 5 years old, hindi pa rin diretso magsalita, sometimes he babbles, they enrolled him in a regular school with normal children, the boy behaves differently, masyadong hyperactive, maingay, galaw ng galaw ... pero matalino daw siya, e halos ayaw daw umuwi kapag tapos na ang klase nila, gusto pa rin daw niyang matuto, good thing hindi nirereklamo ng ibang parents..

sad thing is, ang yaya lang ang nag-a-asikaso sa kanya, the father, grandparents are busy with their own work, kaya hindi mo rin ma-aasahan na isu-supervise nila yung developments ng bata, now i am hating my cousin, kasi sobrang in-denial pa rin siya na something is wrong with her son, dapat hands-on din siya lalo na't critical years of learning ng bata.   

[ratacutie]

Ako naman ga sis, I will undergo have the CAS done on Friday.  The past 2 weeks kasi parang di daw lumaki FL (femur length) nya...but sabi nga ng OB, the CAS is just a precaution.  She has seen many cases like that na yung FL medio mabagal or hindi lumaki but it turns out ok naman.  It could be attributed daw to many factors, like inaccurate reading, the machine, etc.  But to be on the safe side, pa-CAS na daw ako on Friday.  I have pa kasi GDM so puede rin yun complication sa baby.  My baby is big kasi, everything is 3 weeks advanced in size (including weight) except yung femur length nya.   But now pa lang, I am praying and praying.  But whatever God's will is, we will accept it.    I just pray for strength too.

[wuvshoe]

ang nakakalungkot is yung kaya natin sila protektahan until bata sila pero when they explore the world na dapat tayo ang mga unagn fans nila para hindi sila maintimidate sa ibang tao.. strength for us.. God's grace and prayers...

this is true!
when i was 12, a classmate accidentally found out about my 'defect' and mocked and taunted me for it. i can't forget it until now!
but what's worse is when my siblings or even my own parents would use it against me when we're arguing. they'd say "karma yan kasi masama ugali mo" to end the argument. thankfully, i didn't turn into a sociopath -_____- please don't do this to your kid ever! i know you can't imagine doing it now... but when they turn into teenagers and start talking back, you may be tempted... Siguro just imagine your teenage years and then add a 'defect' or disability to it - it is so much harder to deal with the 'real world'.

i'm praying for all you moms and your precious babies =) 

[golden]

Sana nga sis mitchoy . Wala na nga sanang sumunod. I'm always praying na sana ok si baby ko.

Sis koi1028 , yan ang kinakatakot ko. Pag dumating na yung point na haharap na si baby ko sa maraming tao (like pag papasok na sya sa school). Sana di sya magpaapekto kung sakali mang may kukutya sa kanya (tanggap kong may mga taong ganyan at di talaga natin sila maiiwasan). Gagawin ko lahat mapalaki ko lang baby ko nang maayos at nang may magandang puso para kahit saktan sya ng ibang tao, di sya masyadong maapektuhan. And of course, andito kaming parents nya parati para sa kanya. Sa tingin ko yun ang mahalaga, ang suporta ng mga magulang

Sis ebiko, kaya ako hindi masyadong kinakarir ang pagtratrabaho kasi gusto ko tutok ako sa anak ko. Gusto ko sana maging stay-at-home-mom para matutukan ko baby ko pero di afford eh. Hindi sa pagmamalaki pero marami na rin akong pinalampas na promotion. Maraming nagtatanong sa akin kung bakit hindi na ako nagaapply for promotions (since I was one of the most performing employees). I just tell them that I want to focus more on my baby. Natatakot ako na pag nagpapromote ako, mas bibigat ang trabaho ko at baka di ko na masyado mabigyan ng atensyon ang anak ko.

Sis ratacutie, I'm praying for child's health and safety. Sana okay ang lahat.

Sis wuvshoe, thanks for telling us about your experience and thanks too for the prayer. *hugs*

[ratacutie]

^Thanks sis.    Heard mass nung Monday, and tamang tama the gospel was about faith.    I know God's will will always be the best, so whatever happens, we will weather it.

[ebiko]

this is true!
when i was 12, a classmate accidentally found out about my 'defect' and mocked and taunted me for it. i can't forget it until now!
but what's worse is when my siblings or even my own parents would use it against me when we're arguing. they'd say "karma yan kasi masama ugali mo" to end the argument. thankfully, i didn't turn into a sociopath -_____- please don't do this to your kid ever! i know you can't imagine doing it now... but when they turn into teenagers and start talking back, you may be tempted... Siguro just imagine your teenage years and then add a 'defect' or disability to it - it is so much harder to deal with the 'real world'.

i'm praying for all you moms and your precious babies =)

it would really be painful if that defect would be used against you, and worst coming from your own family, who should be the first to understand the situation. 


i too, have a congenital defect ...

and i was lucky that my family never took that against me everytime may mga misunderstandings or arguments. they treated me normally, send me to private schools, and earn a degree, let me attend parties, sports activities, have BFs like any normal person do, i enjoyed every perks, they never discouraged me. my parents would sometimes be hesitant, but they would always support my decisions. 

i also have lucky friends who understood and accepted me for what i am and always supportive.

kailangan lang talaga lakas ng loob, marami kasi ako non e  , i don't let my defect hinder things which i know i can do, as long as i know i can do it.

i take pride in every achievement i make, not because naawa sila sa akin, BUT because i did it on my own.

i was too afraid nung nagbuntis ako at baka magkaroon ng complications sa baby, but my OB assured me, every thing is gonna be fine, so when i got my CAS for the baby -- normal lahat.

i am also thankful that i have a hubby [and his family] who understood my situation. 

mga mommies, lakasan lang natin ang loob natin, para mas lalong ma-encourage ang ating mga babies to live a normal life.

[momofbabyGs]

hello mommies! I am deeply touched by reading all your stories. There is indeed some areas that Congenital Anomaly Screening can't see just like in my son's case.  When I was pregnant with Grant, I had CAS to check his physical condition (no. of fingers, toes, structure of the heart, etc...). The result was normal but CAS wasn't able to detect eye defects.  I gave birth on Sept 2008 and we found out that Grant has coloboma on Jan 2009 (he was 4months old).  Coloboma is a congenital eye defect. Some of the eye nerves particularly the optic nerve (on Grant's case) that connect to the brain did not develop.  So, he may grow up legally blind. I know how devastating it is for parents to hear the news for the first time. So I can relate to how you felt sis Golden. 

Coloboma might be related to other congenital anomalies.  To rule out that his coloboma is NOT related to CHARGE SYNDROME, Grant underwent series of tests like Chromosomal test (to check if one of his chromosomes failed and to check if his condition came from my genes or his father's), 2d echo to check his heart, kidney ultrasound and MRI. Thank God everything is normal so his coloboma is just a fluke.

Grant started to wear eyeglasses at 4months with a grade of 150/250 and by May 2009, it went as high as 450/450.  He's now used to his eyeglasses kaya di na kame nahihirapan na isuot sa kanya. He removes it kapag medyo inaantok na talaga siya.  He started on PT since he was 4months and it did help him a lot.  Starting this Friday, he will start on occupational therapy naman. According to the Geneticist and the Child Developmental Doctor, it's best that we do early intervention like therapy.  For Grant's case na medyo weak ang vision, physical therapy and occupational therapy will help him in his motor skills.  Di naman siya delayed sa motor skills pero it's like preparing him on how to move around given his little vision.

I agree with all of you that we need to always keep our FAITH up.  God knows the secret cries of our hearts and our wishes for our children and I know He's listening and He'll definitely help us and our children with their condition.

Let me share my blog about my son when we found out about his coloboma:

http://givendelfierro.multiply.com/journal/item/22

Now, Grant is doing very well. Malikot na din at super takaw.  All these good things I give praise to God talaga!


Sorry for the long post... Nadala lang talaga ko that I met moms that I can relate with...

[jasmville]

^ sis, teary eyed ako sa post mo, and wala ako paki kahit makita ko dito sa office na mangiyak ngiyak while viewing and reading your post in multiply.

ang cute ng baby mo and his eyeglasses add more charm to his personality.

i frequent this thread not because my baby has a congenital defect but i learned na once you become a parent pala, you see your own baby in every child you see, kahit nga minsan yung mom na namamalimos sa may mrt dala yung baby nya na may hydrocephalus, naiiyak ako at the sight of them. pero what can i do? i thought kung mayaman lang ako pinagamot ko na yung anak nya.

back to topic po, my cousin's daughter, has multiple congenital defects. she is already 6 years old we dont know if she has been already diagnosed, or has seen a doctor. the last news we heard about her condition was that her mom was trying to look for a pt to try to treat her. 

yung toes nya are complete, 10 all in all, pero yung middle toe, di ako sure kung right or left foot is putol. half lang ang meron. well, this is not a big concern di ba, she can still walk normally despite this.  the thing is her facial muscles seem to have frozen, (and this is why they are seeking for a pt) na para syang nagpabotox. she cant smile, she cant frown. parang laging grimace ang facial reaction nya. all of her pictures na alam mo naman na nagsasmile sya, di mukhang smile. di rin frown. she always drools kaya hirap din sya magsalita na parang hinahabol nya yung saliva nya. and her eyes, parang laging teary eyed. and frozen din ang muscles nya around her eyes. she cant squint or make her eyes happy. i really feel for her even before when i havent had my own baby.  pati mom ko and my other titas really.. pero wala naman kami magawa, we are not her parents. my titas talk naman to our cousin and pinapatignan na yata nila and ipapatherapy na din.

tama kayo, the only thing we can do is be strong for our kids, cherish every moment with them, and have faith in the Lord. He wouldnt give us something He knows we cannot handle.

[momofbabyGs]

Sis jasmville, thanks...

if your cousin's daughter is still looking for a PT maybe I can refer you sa Therabilities, diyan nagPPT at OT ang baby ko. Medyo long queue talaga to be able to get a slot ng PT or OT kaya mas maganda if you can set an appointment first. Sa Pasig ang clinic/office nila.

[evylora]

osbrang nakakaiyak naman ang stories niyo mga sis!!!

i am 4 1/2 months pregnant and sana all's well with my baby.. natatakot ako para sa kanya...
 
sa mga mommies, be strong kasi sa inyo rin kukuha ng strength si baby when he's ready to face the reality of the world. tama sila, every baby is a blessing from God and i believe na hindi niya ibibigay kung hindi natin kaya...

God bless!!!

[golden]

Sis momofbabyGs, thanks! Sana mas lalong maging ok mga baby natin.

Sis jasmville, pareho tayo. Ever since nagkababy ako, nakikita ko baby ko sa lahat ng bata. Ang bilis ko na ring maiyak whenever I see babies na may mga sakit. Now I know kung bakit ang mga nanay natin ay iyakin. Sana maging okay na rin yung daughter ng cousin mo sis.

[virgogirl98]

momofbabyGs i was really touched by your story! you have a very cute boy indeed! just stay strong and i only hope for the best for your family!

[honey_iya]

^sis, ka-birthday ko pa si baby grant