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Author Topic: Does Your Child have a Congenital Defect?  (Read 75051 times)

golden

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Does Your Child have a Congenital Defect?
« on: November 24, 2008, 04:11:01 pm »
hello mga sis!! i started this topic just to find out if there are also moms out there whose babies have a congenital defect. baka may maiaadvise po kayo sa akin. im a first-time mom and i just gave birth 2 months ago. kakalungkot po kasi my daughter has amniotic band syndrome. her thumb is missing on her left hand. i was in a state of shock a few minutes after i gave birth. i was expecting the nurses and the doctors to say: "congratulations mommy! you have a healthy baby girl.". pero mga sis hindi ito ang una nilang sinabi sa kin. ganito ang sumalubong sa akin pagkalabas ng baby ko: "mommy, missing po ang isang digit sa left hand ng baby nyo". hays, naiiyak talaga ako pag naaalala ko yung araw na iyon. hindi talaga ako nakapagsalita mga sis. and when they brought the baby to me, di ko alam gagawin ko. tulala ako. and i cried everytime i see her left hand. my mom was of no help at first. she blamed me for what happened. baka daw may ininom akong gamot kaya nagkaganun. my daughter is their first apo on my side, maybe my mom was expecting a perfect beautiful baby girl. but my baby girl for me is perfect. buti na lang very supportive ang hubby ko sakin. never nya akong sinisi sa nangyari. may mga ibang tao pa nga na pabirong nagsasabi na baka daw may ininom ako. talagang nalungkot ako sa mga reactions nila.

at first, hindi namin sinabi ni hubby sa mga friends na dumalaw sa amin sa hospital. ayaw ko kasi na maawa sila sa baby ko. i want them all to be happy for us. baka lang kasi maging malungkot sila pag nakita nila kamay ni baby. mas lalo lang ako madedepress pag ganun. sa mga relatives lang namin muna sinabi. karamihan nga sa kanila told us na swerte si baby. "lucky nine" daw. siguro sinabi nila yun just to cheer us up.

pag tinitingnan ko ang baby ko, ang daming pumapasok sa isip ko. pano sya gagamit ng kutsara't tinidor? ngayon pa lang nakikita kong nahihirapan syang dumapa at magcrawl dahil sa left hand nya. kami ni hubby nahihirapan pag nakikita namin na talagang pinipilit ni baby gamitin yung left hand nya para magcrawl.

alam nyo mga sis, dahil sa nangyari kay baby, mas lalo ko syang minahal. a lot of people are telling me na baka maging overprotective ako sa anak ko dahil sa kamay nya. i said to myself that everything happens for a reason. if this is what God has given me then i gladly accept it. ngayon, unti unti na naming sinasabi sa mga friends namin yung tungkol kay baby. unti unti ko na ring natatanggap ang reality.

sa mga mommies po na may parehong situation, how do you deal with this? natatakot kasi ako na baka kapag lumaki na si baby, pag pumasok na sya sa school eh baka pintasin sya ng mga tao. ayokong naaawa sila sa kanya at ayokong pagtawanan nila sya. i know that this is unavoidable pero ayaw ko namang ikulong ang baby ko. share naman po kau ng experience nyo.

maraming salamat po sa mga magpopost. God Bless po and always take good care of your babies.  :)
« Last Edit: November 24, 2008, 04:24:26 pm by golden »

wuvshoe

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Re: Does Your Child have a Congenital Defect?
« Reply #1 on: November 25, 2008, 09:32:23 am »
hi!
i can't give you any advice as a mom since i'm not one... but i was born with a congenital defect so i can probably share some insights on this... let me know.
enjoy the first 4 years muna as she will be unaware of how unique she is. i didn't start 'dealing' with mine until i was 5 years old and had to start school. honestly, mahirap. you have to be strong and your little girl will draw strength from you :-)

you can PM me if you have any questions.

p.s. about the comments na maswerte, lucky 9, etc. i wouldn't hype it up. i also got that a lot as a kid... then pag hindi swerte, everyone would go "ayyy... bakit ganon? baka karma pala yan! hahaha!" it may add pressure on the kid lang...


Vera

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Re: Does Your Child have a Congenital Defect?
« Reply #2 on: November 25, 2008, 12:54:12 pm »
My son's right eye is cloudy-- there are times and it's noticeable and there are times when it's not. One time when we were at the mall, someone said, "What happened to your baby's eye?" I just answered, "Inborn!" and turned away.

I love my son so much and for me he's perfect. Most people who have seen him said he has the most beautiful eyes. I refuse to imbibe in his consciousness that his right eye is cloudy. He's so smart and such a happy baby and more handsome than any baby I've seen. I even have a blog for him -- http://www.raisingdaniel.com

Don't be discouraged and avoid thinking that your baby has a defect. She is perfectly normal and if you choose to believe that she is, she will believe that she is and will grow up a normal kid!

Frenzied

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Re: Does Your Child have a Congenital Defect?
« Reply #3 on: November 25, 2008, 02:07:37 pm »
^vera - agree very cute ng baby mo.

golden - was it not seen in the ultrasound? don't get affected with what other people says. what's important is that you and hubby are very supportive of each other. as your baby grows older, highlight her strengths and good traits rather than get affected all these time with her condition. Your baby is unique but don't let her feel that something is wrong with her. just treat her like a "normal" kid so she wouldn't feel bad when she grows old and realize that there is something different with her. pardon my using quotation marks because it's not for me to brand any baby as normal or abnormal. for me, all babies are special.  :)

FickleMinded

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Re: Does Your Child have a Congenital Defect?
« Reply #4 on: November 25, 2008, 02:34:29 pm »
hay naku,grabeh naman yung mga nurse na yun,instead of being supportive,ganon pa bungad nila, but anyway,you know what. your baby is perfect just the way she is. Be grateful,she's an angel from above. have you read on other forum how our other sisters are trying everything basta magka-baby lang,as in kahit ano tatanggapin nila,as long as it's a baby, sorry but I don't like the idea of "treat her like normal" because in a first place,she's perfectly normal, the more you treat her with extra care, the more na ma fi feel nya yung difference nya sa ibang kids or sa kapatid nya, just treat them fairly, don't use it as a reason to treat her "differently", the missing finger doesn't make her any less of a person. she can do much just like other kids with 10 fingers.As she grow older,give her some responsibility around the house just like everyone else.don't tell her that she can't do a certain things just because of that, instead let her do it on her own way,let her figure things out and just be supportive.
« Last Edit: November 25, 2008, 02:39:20 pm by FickleMinded »

ratacutie

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Re: Does Your Child have a Congenital Defect?
« Reply #5 on: November 25, 2008, 02:55:47 pm »
Sis golden, yesterday ko pa nabasa post mo but I didnt want to be the first to answer kasi wala naman (ata) congenital defect baby ko.  However, I empathize with you because I am a mom too and we feel our children's pain 10x more than they feel it.  If we can only protect our kids from every hurt in this world ano?  Anyway, all I can do is support you through GT.  Stay strong sis, you will need it lalo na when your baby grows older and interacts with other children.  Children can be more (inadvertently) cruel than adults sometimes because they make unthinking remarks.

By the way, when I said na wala atang congenital defect baby ko kasi napansin namin dati na medio (as in slight lang) duling sya.  We had a pedo optha check her out and sabi nya baka hindi.  Baka extra skin pa lang daw kasi the bridge of her nose is not yet developed.  We were thinking sayang kasi sobrang ganda ng eyes nya and it's her most arresting feature aside from her lips.  We will have to go back and have her checked when she is 3 years old to totally rule it out.  Pero ngayon, parang hindi na masyado nakikita ang pagka duling nya (medically sabi baka may pseudo strabismus sya).  Yung sa case nya kasi puede pa icorrect kung meron nga later on.  But of course, we pray na wala.

Sis, wag ka makinig sa sabi sabi ng mga tao.  All babies are beautiful and lovable.  Anyone who says otherwise is an ignoramus.  ;)

Sis Vera, sobrang guapo ni Daniel!  ;D
« Last Edit: November 25, 2008, 02:57:20 pm by ratacutie »

Vera

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Re: Does Your Child have a Congenital Defect?
« Reply #6 on: November 25, 2008, 04:00:50 pm »
Thanks girls. Kaya lang minsan nakakainis lang yung ibang mga tao, mga pintasero at pintasera. Merong lalaki dito na anak ng helper ng neighbor, tinawag nya baby ko na bulag. Grabe inis na inis ako! Buti na lang nakapagpigil at dinedma ko na lang ang pagka ignorante nya.


maribeth

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Re: Does Your Child have a Congenital Defect?
« Reply #7 on: November 25, 2008, 05:08:40 pm »
^sis vera, cute ang baby mo. Kakagigil nga eh. Sarap kurutin... ;)

That's the best you could do. Deadmahin. Bakit ka naman papa-stress sa mga taong ignorante, di ba?

Just remember that our babies are gift from God. They are always perfect. So let's treasure them.

ratacutie

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Re: Does Your Child have a Congenital Defect?
« Reply #8 on: November 25, 2008, 05:32:00 pm »
Thanks girls. Kaya lang minsan nakakainis lang yung ibang mga tao, mga pintasero at pintasera. Merong lalaki dito na anak ng helper ng neighbor, tinawag nya baby ko na bulag. Grabe inis na inis ako! Buti na lang nakapagpigil at dinedma ko na lang ang pagka ignorante nya.



Sis kasi naman ignorante talaga literally.  Hindi naman kasi siguro na-instruct yun on politeness.  Kakainis talaga minsan mga tao.

yuki

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Re: Does Your Child have a Congenital Defect?
« Reply #9 on: November 25, 2008, 05:38:19 pm »
nakakaiyak naman yung mga posts nyo... not because i feel sorry for your kids pero the way you put your words for the love of your babies superb!

hunny_ally

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Re: Does Your Child have a Congenital Defect?
« Reply #10 on: November 25, 2008, 05:53:27 pm »
Thanks girls. Kaya lang minsan nakakainis lang yung ibang mga tao, mga pintasero at pintasera. Merong lalaki dito na anak ng helper ng neighbor, tinawag nya baby ko na bulag. Grabe inis na inis ako! Buti na lang nakapagpigil at dinedma ko na lang ang pagka ignorante nya.



vera, your son is so cute! i think he has the same condition as my niece. she's 1 year now but we notice parang nag-lighten up na yung cloudliness from her eye.

eowyn

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Re: Does Your Child have a Congenital Defect?
« Reply #11 on: November 25, 2008, 06:36:45 pm »
I can definitely relate to this.

My son was born with a congenital disease involving the intestines. He looked normal when he was born, though he was vomitting greenish substance right after he was taken out of my tummy. The doctors thought he was just stressed as he was born via emergency C-Section. He wasn't given anything (milk) because he continued to vomit on his 3rd day of life.

His pedia talked to me and his dad, and informed us that my son might be suffering from Hirsprung disease. She referred us to a pediatric surgeon and a neonatologist. I was really crying so hard; I suddenly forgot all the pain that I've been experiencing since I gave birth. No matter how the doctors seemed relaxed, I remember myself shaking in disbelief. I weeped all the more when I recalled the hardships that I had when my baby was still in my womb. He may be unexpected, but he is definitely NOT unwanted.

People started to ask me if I took some pills or contraceptive, which to me was a subtle way of asking if I had intentions to abort my baby. I resent their queries, because I know that even though I wasn't ready to be a wife, I AM ready to be a GOOD MOTHER. I can sincerely swear that I never took any drug that would harm the baby. 

Our little boy underwent his first major operation on his 3rd day of life. A huge portion of his small intestines were cut, as it turned gangrene due to lack of blood supply. It was learned that a part of his intestines did not develop, thus leaving a whole on the stomach's membrane, where the intestines sort of entered and got strangulated. My baby had an ileostomy, and for almost 5 months, he pooped on the right side of his tummy. We weren't able to use a colostomy bag for him, as the area around his ileostomy had been very irritated with the acid coming from the small intestines. We had to ardiously change his gauze, which served as his "diaper." It was really hard for us parents, but I know it's even harder for our baby.

In August, he had his 2nd major operation to close the stoma (ileostomy). We had a difficult ordeal again, for he was not allowed to eat for 8 days. He kept on crying and crying; I felt bad giving him a pacifier everytime he felt hungry. All those days in the hospital, I had an average of 3 hours of sleep. I absented myself from work so I could better take care of him. Seeing how my son endured all the pain brought about by his condition, he really lived up to the meaning of the name we had given him: STRONG.

At present, Baby Ethan looks just like the normal baby. No one could guess how greatly he suffered during the early days of his life. His doctors say his recovery is really miraculous. He gained weight despite his condition, and he developing well and he can perform like any other normal babies his age.

I also worry sometimes, how I should explain everything to him when he starts to notice the scars on his tummy. His dad, he may not say it, but I know he's also concerned about how our son should respond to the namecalling he might encounter in the future. I just say that as long as we raise our baby well and as long as he grows up to be a good citizen, I know we should not worry about what other people would call him. If he begins to ask about his scars, I could tell him "It's ok, baby. Mommy also has it. We both have scars because you are my son." :-)
  
P.S.
Sorry for the looooong psot. Just got carried away.

joden

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Re: Does Your Child have a Congenital Defect?
« Reply #12 on: November 25, 2008, 09:05:14 pm »
i can relate to this as well.

my baby has a congenital heart defect called PDA or Patent Ductus Arteriosus.

Patent ductus arteriosus (PDA) is a condition in which the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby

normally, the blood vessel should close as soon as the baby is out na. but with my baby, it didn't. when i gave birth to my baby, may naririnig na heart murmur sa kanya, plus she had pneumonia too. nagamot naman yung pneumonia after 10 days. regarding the heart murmur, our pedia wanted to give it a month to see if mawawala siya. but it didn't. so he referred us to a pediatric cardiologist na.

after meeting with the cardio and doing a 2D-ECHO, we found out na nga about her congenital heart defect. it is operable naman, and thank God hindi naman siya open heart surgery if ever because the blood vessel is outside the heart. inaantay lang lumaki na konti si baby, around 2 years old kasi we all know naman how hard it is pag masyadong baby pa ooperahan. or if kaya pa talaga nya, baka nga older than 2 years old pa. but we have regular check-ups and if the cardio sees na kailangan na din siya operahan even if wala pa siya 2 years old, then we would proceed. pero thank God ulit at mukhang okay naman si baby. she looks healthy talaga and our cardio says na sa malayo, mukhang wala talaga siya prob. and hindi siya yung payat at nangingitim. her weight nga daw is high normal (although bumaba ngayon kasi 2 weeks siya nagkasakit recently because of amoebiasis). pero super likot pa din nya and maliksi siya. ang downside lang pala ng sakit nya is madali siya hingalin. so she has a medication for that.

we take extra care of her na lang because of her condition. minsan napapaisip ako when i'm surrounded by my numerous nephews and nieces tapos nagtatakbuhan sila and all...bawal kasi mapagod sobra si baby paglaki nya, until maoperahan siya. si hubby gusto sana noon bumili ng inflatable pool..para turuan na mag-swim si baby kahit papano. mahilig kasi kami magswimming. pero yun nga, sa ngayon di pa pwede so wag na lang muna. i stay positive na lang kasi sabi naman ng cardio, once naoperahan na siya, pwede na siya sa mga strenous activities.

@sis golden, advice ko lang din po to treat her normally. kasi i know someone na yung right arm nya maiksi, halos wala na nga. after ng elbow, konti lang hands na agad. and even the hands, 4 fingers lang. pero her parents and her bro & sister treat her normally. kaya okay naman siya. even her friends from school okay naman. although na-meet ko siya highschool na siya so i don't know din yung first experiences nya sa school. basta we just have to be strong for our babies.

sorry din po sa long post.  :)

Vera

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Re: Does Your Child have a Congenital Defect?
« Reply #13 on: November 25, 2008, 09:13:11 pm »
eowyn - you're such a strong woman! I wouldn't wish to have your situation but I also wasted so much tears for my son and experienced how it feels to be totally helpless. I understand what you went through. Thank God everyday for your son's healing.


marose17

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Re: Does Your Child have a Congenital Defect?
« Reply #14 on: November 26, 2008, 09:45:18 am »
Joden:   One of my sons also had PDA because he was a preemie (born at 29 weeks). Fortunately, it closed and he did not need an operation.  The pedia-cardio who attended to him was Dr. Ty of Manila Doctors Hospital.  Would you believe that the medicine given to my son was plain old ibuprofen.

Golden, Vera and Eowyn:   I could relate with you somehow.  When my babies were born, they were literally on the brink of life and death.  It was heartbreaking, to say the least.  Looking back on those days, I felt like my life was suspended, as if I was in a time warp. Fortunately, they're all right now. 

You have to be strong but not defensive.  Give your children lots of love and attention so they will grow up with a healthy self-esteem.  Explain why others may look at them and treat them differently - it's important for them to understand - but make it clear that for you and those who matter, they're perfect just the way they are.
« Last Edit: November 26, 2008, 09:47:27 am by marose17 »

ante_meridiem

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Re: Does Your Child have a Congenital Defect?
« Reply #15 on: November 26, 2008, 12:13:03 pm »
hi sis golden, im also a mom like you and tama yung sinabi nila tayong mga moms are more affected than our babies. but dont be discouraged. i know it's easy to say for a mom na wala namang congenital ang baby nila but maybe the feelings will take a while and eventually things will be alright. dont go feeling anything bad kasi whatever you feel for them, nararamdaman din nila yun. just pray and be happy for them, let them know that you love them whatever happens.

everything that comes with them is a blessings and you have more blessings to count on rather than counting the odd ones.
« Last Edit: November 26, 2008, 06:28:18 pm by ante_meridiem »

joden

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Re: Does Your Child have a Congenital Defect?
« Reply #16 on: November 26, 2008, 02:20:36 pm »
Joden:   One of my sons also had PDA because he was a preemie (born at 29 weeks). Fortunately, it closed and he did not need an operation.  The pedia-cardio who attended to him was Dr. Ty of Manila Doctors Hospital.  Would you believe that the medicine given to my son was plain old ibuprofen.



sis, si baby ko 36weeks pero she was still considered premature. may i ask kelan nagsara yung sa anank mo? at what month or year? we're still hoping na magsara pa yung blood vessel. we're told that now that she's almost 10mos, medyo impossible na. pero we're still hoping. miracles happen everyday naman diba? and yung medicine nya ngayon, aldactone. it's a diuretic, pampaihi para di mag-flood ang lungs nya.
« Last Edit: November 26, 2008, 02:22:18 pm by joden »

marose17

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Re: Does Your Child have a Congenital Defect?
« Reply #17 on: November 26, 2008, 03:32:09 pm »
Yung PDA ng son ko, nagsara when he was still in the hospital - around the 33rd week (gestational age) or the 1st month (chronological age) and after treatment with ibuprofen.  The med which is really prescribed for this is indomethacin, which is not available here.

I was told (and I have read) that PDA is common with preemies coz the rules on full-term babies (such as the closing of the duct after birth) do not apply to preemies.

If you want to get a 2nd opinion, go to Dr. Ty, but he's no-frills ha.  He's not going to give you false hopes.

Good luck.

rics

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Re: Does Your Child have a Congenital Defect?
« Reply #18 on: November 27, 2008, 01:51:48 am »
I saw this posting at N@W and it is an inspiring story of a father and his disabled son. Together, they complete in marathons and triathlons. 

Here' s a video of them:
http://www.godtube.com/view_video.php?viewkey=8cf08faca5dd9ea45513

Here's their website:
http://www.teamhoyt.com/

golden

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Re: Does Your Child have a Congenital Defect?
« Reply #19 on: November 27, 2008, 11:06:03 am »
thanks so much to all who posted. im sorry for my late reply. i just came back from day off. i access GT here at work. no internet at home.

anyhow, i want to thank you all for giving me pieces of advise. i will always remember what you posted.

to sis wuvshoe, thanks! don't worry, im doing my best to be strong for my baby. it's not that easy at first but im glad and thankful that my husband is always here beside me.

i agree with you sis Vera. For me, my baby is perfectly normal. most of the times, when i look at her, i forget that she only has 4 fingers on her left hand. i think this is a good sign. it means that im slowly accepting the truth. surprisingly, it's not that painful anymore. also, i agree with our sisses here. you have a very healthy, happy and cute baby.

to answer sis Frenzied's question, nope. we did not see it in the ultrasound. maybe the ultrasound technician saw it but opted not to tell me. and thank you din po sa advise.

sis FickleMinded, sinabi mo pa. i don't know why it was the first thing that the doctors and nurses told me. maybe it's the procedure. for me though, it was heartless. alam mo sis, pareho kayo ng sinabi ng isa kong friend. he told me not to exempt my daughter from doing chores around the house when she gets older. he also told me to let my baby use her left hand more often and make it as one her strengths.

sis ratacutie, it's ok. thanks din po sa advise. thank you for empathizing with me. it's true, we parents suffer more when we see our child in pain, that's why im always doing my best to be strong for the sake of my daughter. sis, all's well with your daughter. as you've said, napakaganda pa naman ng eyes nya.

sis eowyn, i admire your strength. i know that your baby boy will be stronger and healthier when he grows up. don't worry, he is in good hands as long as you're always there for him. he is such a lucky child to have you as his mother. pareho tayo, some people asked me too if i took some medications in when i was pregnant, hinting that they suspect me of trying to abort my child. it was very painful. anyways, im trying to forget it. i know that i never neglected myself and my baby when she was still inside me. i wouldn't do a thing that will hurt my baby.

sis joden, thanks! i hope that you're baby's future operation will turn out to be successful. napakaactive pa naman nya. always take good care of her.

sis marose17 and sis ante_meridiem. thanks so much po sa mga advise nyo.

you all enlightened me and helped me a lot. i no longer feel alone. i now feel a lot better than before. maraming salamat sa inyo!
« Last Edit: November 27, 2008, 11:07:52 am by golden »

 

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