Does Your Child have a Congenital Defect?

[picPAUboom]

nakakaiyak ang pagmamahal nating mga mommies sa mga babies natin.

ate michoy, sis golden and the rest, I super admire your courage and good heart. stay strong mga mommies. with your love for your kids and enormous faith in God.. you can move mountains.

regarding sa post ni sis hunny_ally, i had a patient (8 y/o boy) who was also diagnosed with DMD. before, whenever i see him during our PT session, i can't help but love him more and more. nakakaiyak kasi i know his family can only be with him for a few more years pero siguro God has better plans for them. God wanted him to be an instrument to bring their family closer together.

[evylora]

hi mga sis!!!

i can somehow relate...
i am 36 weeks and 4 days pregnant and yesterday sa ultrasound ko, may note na nakalagay that baby has a probable congenital hydrocele daw. i ask my ob kung [textspeak!] yun. medyo naiiyak na me kahapon pero sabi niya it's normal sa baby na medyo swollen ang scrotum niya and may water pero mawawala din daw yun when he reached 1 yr old. kahit papano natatakot me para sa baby ko kasi di ba sabi nga nila, Minsan di lang 1 ang defect sa baby. may gdm pa naman me kaya natatakot talaga me para kay baby...

i know prayers lang talaga ang makakatulong satin kaya keep on praying mga SIS!

[golden]

^Sis, I am praying for your baby. Don't lose hope, ok? Everything will be alright. Good to know though that the OB informed you na mawawala rin yun after the child turns one year. God is good sis. Keep praying.

[koi1028]

keep calm, baka maapektuhan ang baby kapag depress ka... talk to him na he will come out na and you will take care of him...

Pray pray pray...

[evylora]

thanks sisses... sana kasing strong niyo me para kayanin ko para kay baby....

nakakaiyak lang kasi hirap na nga me mag conceive because of pcos tapos malalaman ko pa na may water ang scrotum ni baby. 3 years after pa me nagc onceive after several work ups. buti may ganitong forum at least nawawala ang fear ko.

sana safe and healthy kami both ni baby...

thanks po sa prayers!

god bless!!!

[Vera]

I posted earlier on this thread. My baby's right eye is cloudy. Now he's 22 months old and he's such a smart baby. He can count from 1-30 in 4 languages (English, Ilonggo, Cambodian, and Chinese) and knows all the fruits, letters in the alphabet, items inside the living room, bedroom, kitchen; he also knows a lot of the animals.

Honestly, I forgot that he has a congenital defect until I came across this thread again. I think the more focused we are on the defect, the most we think of our child as someone who is not normal. If we cease to think about it and look at our child as a normal kid, s/he'll certainly grow up a normal one.

[golden]

^I have to agree with you sis. I was the one who created this thread and I am now regretting it, although we get to have support from our sisters here: with all their kind, warm and loving words. Can we have this thread deleted kaya? I shouldn't have created this thread in the first place. I find myself so rude now, asking you guys if your children have congenital defect. I was being immature and insecure when I created this thread. I hope everyone forgives me.

[leeh_09]

I gave birth last nov 24 (11:18am) to a baby girl and named her laela. when i woke up at 3pm sa recovery room, i was so excited to get into my room and see my baby. Dinala nila ko sa room at 4:30pm. Pagdating ko sa room, everyone was so quiet, i was thinking na baka hindi lang nagkasundo mom ko and in-laws. @ 5pm everyone went out of the room to see the baby sa nursery and my mom was left inside. she asked me if there was a time na nakapag take in ako ng gamot while i was pregnant. kinabahan ako sa tanong nia and all i can answer was "why?"... nun una they were hesitant pero yung sister ko na nagsabi. my baby experience "amniotic band syndrome"... may amputations siya sa right  hand and both toes. when i heard about it sobrang iyak ko... my baby could have died inside me, they told me it was a blessing na hindi ambilical cord, leeg or body and naapektuhan yet i was sad pa din na she has a defect. Nun una kasi hindi ako naniniwala sa post partum depression and yet now, i dont know how to describe it xe i had a different experience, iba yung post partum depression na naramdaman ko. i was crying for a month. i kept blaming myself khit na alam ko hindi ako nagkulang nun pinagbubuntis ko si laela ko. now lala is 3mos. old, nakikita ko na milestone nia. natatabunan na lungkot ko when i see her smile, and laugh. she's a healthy baby girl. hindi siya sipunin nor sakitin. kahit vaccine di sia nilalagnat. minsan nalulungkot pa din ako but as much as possible i want to surrender everything under God's control. Sabi nga sa bible "we are all beautifully and wonderfully made, created in His own likeness and image.." "and everything was planned even before you were conceived"... kung walang Diyos, i dont know how to survive this challenge i was entrusted. God has a purpose on everything and He will fulfill His promise. i cannot say i have fully accepted everything but im trying my best to understand. Siguro it0 ang purpose ni lala for me, para mas mapalapit ako sa Diyos and everything is a blessing. you may view the website about that syndrome, its a rare condition, 1:10,000 babies lang and im one of the blessed one (www.amnioticbandsyndrome.com). thank you for taking time to read my story...

[Razzy]

^I have to agree with you sis. I was the one who created this thread and I am now regretting it, although we get to have support from our sisters here: with all their kind, warm and loving words. Can we have this thread deleted kaya? I shouldn't have created this thread in the first place. I find myself so rude now, asking you guys if your children have congenital defect. I was being immature and insecure when I created this thread. I hope everyone forgives me.

Sis don't feel so bad. My sister nga was wondering kung bakit daw walang nag start ng ganitong thread sa GT, meron na pala. Iniisip niya baka raw ikinahihiya nung ibang GT mommies. Hindi naman pala. It is always nice to converse with people experiencing the same emotions that we are going through.

[Razzy]

My pamangkin was born with an incomplete bilateral cleft lip and is scheduled for operation on march 25.

Hindi nakita ng sister ko sa ultrasound and till manganak siya, dun niya lang nalaman na may cleft yung lip ng baby niya. naiyak daw siya nung una niyang nakita and sinisi niya sarili niya. Good thing very supportive ang hubby niya. Ngayon, she jokes about the baby's cleft lip pa, hehe. Pag may nagtatanong kung bakit daw nagkaganon sinasagot niya na lang ng "Design yan, design"haha! Tapos naaaliw ako sa kanya pano nagkwento kasi natutuwa raw siya sa smile nung baby, two months na kase and napaka bungisngis na bata. when she grins, super wide grin ang ibibigay niya sa iyo, which my sister says na lalo raw nakakatuwa tignan yung wide grin kase para raw bulaklak yung labi nung anak niya, nakahiwalay kasi yung isang part ng upper lip niya, kaya when the baby grins sila raw super tawa na rin and when they start laughing mas lalo raw natutuwa yung baby, humahagikhik pa,hihi. For sure, pag naoperahan na si baby mamimiss namin ang kanyang mabulaklak na labi

The blessings of having a baby talaga...

[koi1028]

sis razzy, this thread gives us strength and encouragement to love kids more and how to handle these situations.. kaya ok lang itong thread...
guilty ako kasi till now hindi ko pa ulit napapacheck yung eyes ng baby ko, mild ptosis...

god bless us.. God gave these kids to us para tayo ang magalaga...

[mommytaf]

Saludo ako sa mga mommies!!!! 

[pixiedusk]

my baby was diagnosed with Hirschsprung Disease.

he needs operation and it kills me to know how much pain hell be into... im asking god already.. why me? why my baby?

reading this is so inspiring for me... i realized im not alone pala...

can you guys pls pray for me....

[Razzy]

^we will sis, and I know you will be strong for your baby

[tennisaddictmom]

hi mga sis!!!

i can somehow relate...
i am 36 weeks and 4 days pregnant and yesterday sa ultrasound ko, may note na nakalagay that baby has a probable congenital hydrocele daw. i ask my ob kung [textspeak!] yun. medyo naiiyak na me kahapon pero sabi niya it's normal sa baby na medyo swollen ang scrotum niya and may water pero mawawala din daw yun when he reached 1 yr old. kahit papano natatakot me para sa baby ko kasi di ba sabi nga nila, Minsan di lang 1 ang defect sa baby. may gdm pa naman me kaya natatakot talaga me para kay baby...

i know prayers lang talaga ang makakatulong satin kaya keep on praying mga SIS!

hi there dear. just to make you feel better (i hope  , i am a doctor who has seen cases of congenital hydrocoele. your ob was right, most of these cases resolve after the 1st year of life. it occurs because as your baby would mature, there will be disappearance/obliteration of the connection between the abdomen and the scrotal parts. yun kase nagcacause ng accumulation ng fluid. so instead of the peritoneal fluid (yung fluid sa abdomen) draining sa abdomen, sa scrotal region sya nagdra-drain. but your baby will be just fine. dami ng ganyang cases. 

stay strong and keep praying.

[Gythien]

I searched for a thread like this, medyo luma na pala but Im hoping to revive it. if it's ok...

My son was born last Nov 10, 2011. He has three fingers on his right hand and four on his left. may cleft on his hands and feet. other than the physical features, my baby is a healthy baby boy. the ortho also assured us that his hands and feet are functional, pero siyempre kailangan pa din bantayan ang mga milestones and he will always be different physically...

at first, masakit talaga. you cant help but wonder if you did something wrong. sabi, things like these just happen, pero cant help but question why, why our family? out of 90,000, why choose our baby boy? pero now, medyo tanggap na namin. we realized that the challenge is more for us as parents, kesa sa baby namin.

so i guess what im trying to ask is, how do you raise a child with birth defects to be confident and have a healthy self-esteem?  lalo na sa Pilipinas na marami ring uneducated.

[mitchoy]

Hi sis Gythien

I think my son has the same condition with your son; he has amniotic band syndrome (amputated digits of the left hand) and has radioulnar synostosis of the left arm as well. He also has cross-fixation of the eyes. He's 4 years old now, very smart and active and goes to school already.

Don't treat him like he is different from everyone else.  Teach him to be independent.  Always boost his moral.  And don't worry sis, I think you will find that your son will adapt fine, as has my son.  He will find ways to do things without you teaching him.  And be honest to him; tell him his real condition.  Just explain to him in a way he can understand.  Support system plays a vital role also for the kid to accept his condition.

There will be times he'll ask why he's like that.  I always say "that God created you that way because you are very special" and he would smile back at me   To tell you honestly, those are the times that really breaks my heart.  But I always remind myself to be strong and never show any signs that I'm being downhearted (pinanghihinaan ng loob) because tI know he  will draw strength from me.  I always pray and ask for this and to guide us in raising him.  "He" has been our partner eversince

Smile sis and don't worry too much!  Our kids are very special that's why they were created that way.  We may not know the answer yet but trust in the Lord for He knows what's best for them 

[Gythien]

Hi mitchoy!

Thanks for the reply sis. Naiyak naman ako sa post mo. It's nice to draw strength from moms with similar experiences, lalo na I'm a first time mom and nothing like this has ever happened to any of my relatives or close friends so everything is so unfamiliar.

My son has split-hand split foot syndrome naman. We're taking everything in stride and we always try to stay positive. Sabi ko nga, the challenge is more for us as parents. I think my son will cope naman kasi kids are incredibly resilient. I was wondering kung may support group or something for parents and kids with these kinds of concerns, kasi kung wala, I'd like to start one  You're right, support is very important and especially guidance from the Lord. I know my son is a blessing and I love him no matter what.

[pollypocket18]

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. 

Ask ko lang po, ano ang size ng PDA ng baby mo? Yung baby ko kasi meron dn PDA 3mm. Paano po [textspeak!] gumaling at sino Doctor nia? Thanks!

[ithaca0915]

Hi sis sweetieangel,

Thank You for sharing your story..It was really touching and very close to my heart.

We are expecting a baby girl this october and during my CAS at 22 weeks,my OB said na may nakikita syang shadow around the lip area..possible cleft lip daw..but she couldn't confirm  kasi malikot at nakatakip ang muka ni baby,in denial pako nung time na un, sabi ko, wala un kasi malikot [textspeak!] tlaga si baby kya impossible,but still I was a bit worried.

After a week, nag pa 3d/4d UTZ kami pra lang to confirm..true enough, the sonologist showed us na may baby has a cleft lip and possible cleft palate too! After ko lumabas sa clinic, naiyak [textspeak!] ako, naisip ko na baka di maging normal [textspeak!] buhay nya because of her cleft.I was crying for weeks..but thanks to a very supportive family, naging magaan din lahat for me, bumalik [textspeak!] excitement ko sa pregnancy ko. Nagstart ako mag research about clefts, mas nakatulong kasi naramdaman ko na di lang ako nag iisa...ngaun mas na eexcite nako na makita baby ko. I know, no matter how she look,she will always be the most beautiful to me.. =)

Grateful if you could give me some info about your baby's surgey para po may option kami..limited pa kasi [textspeak!] alam kong hosp na nagsespecialize sa cleft surgey.


Again, thank you so much for your story...GoD Bless you and your family!