Does Your Child have a Congenital Defect?

[sachism]

My birthing experience was traumatic and very painful. I had a long labor and when I woke up at the recovery room, 2 resident pedias were waiting for me to wake up ad right away asked my questions such as, how was my pregnancy, anything unusual, did i have CAS, etc. i answered all their questions but I was already very scared. I got more scared when I asked why and they didnt give me an answer.
Until I got back to my room, everyone was quiet. I can feel the tension but nobody was telling me anything which was a torture. A lot of things were going thru my mind. Until the nursery called and asked me to go to Bf, sobrang kabado ako and i broke in tears nung makita ko baby ko. Ang daming nakasaksak sa kanya, gamot, machines, dko alam kung paano magbf sa sobrang daming nakasabit sa kanya

The pedia said na may heart problem nga daw anak ko. Hindi ko naintindihan kasi gulong gulo pako. The next day, he neonat and pedia cardio visited me sa room and said na may PDA daw anak ko, Patent ductus arteriosus. Basically hindi nagsara ang butas ng heart nya. I prayed so hard, was very much in pain. And with God's grace and miracle we were able to bring her home after a week. We would regularly see her cardio pedia and would have 2Decho. After turning one, na clear
Na sya. Blood flow is ok na daw so possible nagsara na ng kusa. She's 2yo and 2 mos now and she does every other kid would do. Though nagiingat padin kami like d pwede sobrang mapagod, too much stress, etc.

God is good indeed. Back in The nursery, i would sing "jesus loves the little children" everytime i BF. stay strong mommies. Tayo talaga ang source ng strength ng family and we are blessed to have our little angels

[marose17]

^ One of my sons had PDA too but it closed in a matter of days.  I guess one of the effects of being born too early.  I didn't know that V had PDA.

[sachism]

Naalala ko na naman marose ito kasi nung naconfine sya last time naghalungkat ng med records. Hehe. I didnt know the exact term before basta nakalimutan ko na. Mahirap nagprocess na info pag ang sikip pa ng dibdib.

Yun nga daw born early or may nabasa ako mas common daw sa girls. D naman sya kulang parang saktong sakto lang 

[marose17]

^ I remember pa that yung gamot dito sa PDA ay hindi available dito sa Pilipinas.  Ang nearest substitute is ibuprofen.  Mabuti na lang the ibuprofen worked sa son ko.  Takot nga ako at first kasi allergic ako sa ibuprofen eh baka kako allergic din ang baby.

[sachism]

Buti d sya allergic

God is good.

[Gythien]

Hi guys! My husband and I are starting a group for families and kids with limb differences. Our son was born with ectrodactyly, he has missing fingers and toes and have a cleft after his big toe and thumb. It's also known as split hand split foot. At first we were really worried about our son and as the months go by, we figure we don't have to worry too much as he will adapt to what God gave him. It was hard talaga at first and wala naman support in the Philippines with congenital limb differences.  We have been looking for families with similar experiences.  Kaya now we are starting one. Please check https://www.facebook.com/projectionwill. Fund raising muna siya ngayon kasi we're raising money for his surgery pero eventually, we want to make it grow to become a support group for families with congenital limb differences. Thanks and hope you'll take the time to look at our page God bless!

[mamichula]

To the TS:

I just wanna share [textspeak!] story ng professor ko nun college. He was born without a left hand. He's my inspiration tlg kasi ang kwento nya sa amin never nya na feel
Na may kulang sa kanya. Basta he went on with gis life the way he should. Minsan nga nakakalimutan pa nya na wala syang left hand.  Imagine buong left hand nya ang wala. Pero super sipag sya. That time dalawa ang jobs nya professor sya pag weekends tapos assistant director sya sa isang tv station Pag weekdays. May masters din sya and nag pphd na ata sya that time. Kaya pag nakakakita ako ng tamad na people na reklamo ng reklamo about life lagi ko naalala former prof. Kasi kahit anung mangyare my mgagawa sa life its all
A matter of perspective.

[textspeak!] the key is to make your child feel na shes just like the rest of us and theres nothing missing/or wrong with her para grounded sya kahit pag pasok nya sa school. Wag nalang papansinin sinasabi ng iba d naman sila mahalaga. An pag naiisip ko nga [textspeak!] prof ko mas maganda pa buhay nya kesa sa ibang tao na complete ang hands tamad naman or walang direksyon sa buhay.

[Jaidens mom]

You were all lucky that eventhough your child has defect, they're alive. Mine was gone. I was supposed to have twins, two girls, but unluckily the other one didn't survive. While just inside my womb, on my fifth month UTZ, she was already diagnosed with complete cleft lip and ecnephalocele located on the back of her head. I was shocked. I dont wanna believe. I could never believe what my sonologist had told me. Well, I'm a single mom all throughout my pregnancy and until now, I'm carrying the burden all just be myself. I had my CAS done a month after I've found out about my other daughter's certain conditions which I dont wanna believe in. I was in deep pain upon hearing the sonologist saying... "Mommy, alam mo naman ng meron si TwinB ng ecephalocele and cleft lip." It was confirmed. And the sac of the encephalocele gets bigger and bigger everytime I had my UTZ done every month. It's not a good thing though, because I could have premature contractions which is not good for me especially for my babies. But I'm still lucky my other daughter is fine except for the fact that her "house" was getting compressed because of the uncontrolled fluid in my other baby's house. I was even confined a week before I gave birth because of premature labor, my tummy was so distended I can't even eat or drink more than enough anymore. Until one night, my waterbag broke. "I'm only thirty four weeks, you can't come out yet my babies." Eight hours after I was rushed in the hospital, I gave birth. It was a feeling of joy I can't explain and a feeling of deep sorrow I will never ever forget, my other baby died, the one with the defect. They were placed each in an incubator because my neonatologist said that they were very tiny. She only spent forty minutes of her precious time here on earth. I only found out about her death after I was placed in my bed from the recovery room. She never made it, my little angel was gone now. I didnt even get to touch her. I even never had the chance to cuddle her. She may be gone but she'll always be here in my heart. Six months past but it only seems like yesterday.I'm still thankful though, my other baby is doing good. I miss her. I miss the. I miss the way how they kick my tummy in the middle of the night. We used to all listen in the music of Mozart at bedtime.  I will always miss her. The day will come hen this chubby li'l girl sleeping next to me become older, I will tell her about having a twin sister and that she's with God now. One day, not soon enough, we'll all be together again

[kharenlouisse]

Now that I've read your story I realize how lucky I am...

After I learn that I am pregnant, mix emotion kami, I undergo Open Heart Surgery kasi that I have to take life time medication to live. But sadly this medicine is contraindicated sa pregnancy it will cause birth defect kasi.

The Cardio and the OB warned me na,if I continue my pregnancy my baby will have 10% chance of birth defect. Every night I had dream of my baby, Naiiyak ako kapag umaattend kami sunday service sa church. At 5months, nagpa CAS kami. Walang nakita ang perinatologist, kumpleto daw si baby

At the time na manganganak na ako si OB medyo nega, she ask me na if magpapaligate na daw ako? kahit na my congenital defect. Kami ni hubby naniniwala na normal siya, nararamdaman ko na god's gift siya kaya nag yes kami kahit 1st and last na siya.

I give birth to a beautiful normal baby girl last december 2012. Si OB ako daw ang first case niya na nag-givebirth with condition like me na walang complication sa akin at sa baby   

Miracle do happen talaga, Just keep on praying and believing 

[crib]

^Congrats sis!

My daughter also has congenital defect but we've only found this out 2 weeks ago. She's now 2years and 4 months old. At first, we had pedia checkup because of rashes from her neck (no other health concerns!) but unfortunately when pedia doing the same routine with the patient, she heard a heart murmur with my daughter. She asked me if my daughter has been sick in the past year or when she was born. I've said that NO but she was premature and infairness to my little girl hindi siya sakitin! The Dr.referred me to pedia-cardio to check her heart. We had 2d echo and found out that my daughter has Ventricular Septal Defect (VSD). I was on shocked, can't talk, crying and just listening to what the Dr. is saying. I don't see any problem with my daughter in her breathing, color of her skin and related symptoms of this illness since birth that's why I can't believe on the result. We had second opinion from other pedia-cardio and by listening from the stetoscope she predicted that my daughter has VSD (i did not tell her the result yet). She said after 6 months she will repeat the 2d echo to check the condition and details of my daughter's heart because she can't rely on the first result of 2d echo. She then advised us to continue the medications, WALANG BAWAL, just let her play or do whatever she wants to do because she's not like other kids with Congenital Heart Disease (CHD) whose hard to breath that makes the skin blue/violet.

Despite of my daughter's condition, I'm very thankful to God that she can do anything without any limitations. GOD is Good and we're hoping that the small hole from her heart will close spontaneously.

Please include my daughter in your prayers. Thank you.

[kharenlouisse]

 @ sis crib, Will do pray for your daughter saka wag kang matakot,..alam mo nung naoperahan ako my kasabay akong 1year old baby sa recovery room. Well, nakaya naman niya yung operation and after a week or 2 napalabas na sila ng hospital.

And share ko lang, Yung sakit ko wala ring symptoms nung bata pa ako, sabi ng Cardio meron na daw ako nito as early as 10years old pero 24 years old ako nung nalaman ko, ayun with in 4months after naming malaman kaylangan operahan na ako .

Base on my experience para akong bata ulit, balik sa normal ang life ko. Super lakas ko na ngayon and nagkaanak pa nga ako db?  

[crib]

^ sis, anong specific heart problem mo if I may ask? anong naging reason bakit biglang na detect nung 24yo ka na sis?

[kharenlouisse]

^ sis, anong specific heart problem mo if I may ask? anong naging reason bakit biglang na detect nung 24yo ka na sis?

Actually yung sakin hindi congenital heart disease kasi hindi naman siya inborn, congestive heart disease yung sakin kumbaga acquired lang siya. Dahil daw sa Tonsillitis,bumaba yung bacteria sa heart.

Bale ang diagnosis sakin is Rheumatic Heart Disease, Mitral Valve Stenosis 

[crib]

ahhh...napatanong lang ako kasi no symptoms sabi mo nung sayo akala ko parehas nung sa daughter ko na VSD din. thanks!

[alyBaba]

Hi, I just gave birth last  May 26, 2013. Hindi pa alam anong syndrome meron sya kasi pinapalakas muna sya bago dalhin sa manila for chromosomal testing. She has multiple congenital anomalies. Both of her wrists are bent, both have no thumb bones (thumbs are "dangling") kaya para itong mapuputol anytime. She has no right ear and she is having hard time breathing. 6 months pa lang ako, I already have an idea na my kakaiba sa baby ko but we still decided to push through with the pregnancy as I could not bear abroting a "live and kicking" baby inside my tummy. We thought it was Edwared's syndrome pero ayon sa pedia na parang hindi daw although dahil di pa nga pa test wala talagang ma confirm pa. Anyway, I posted here just to ask for a neonatal or speccialist doctor na pwede niyo irecommend for this kind of case? Balak namin sya ilipat sa PGH. Completo daw doon at mura. Our bills are piling up (mag 2 weeks na sya sa NICU here sa province) so dun lang muna kami sa PGH. Also, can anyone recommend or refer me to a doctor na nag susurgery na mga ganyang case na i tutuwid ang mga bones sa kamay? Any parent here who have the same experience as mine? I am really depressed this is happening but we already accepted it, it is just really really hard, almost unbreable to see our little one struggle for life. Daily routine ko na ang umiyak 3-4 times a day. thanks.

[alyBaba]

Okay lang pala hindi sa PGH na doctor basta recommended niyo. Kasi my HMO naman ang anak ko. thanks

[kharenlouisse]

Try
Dr. Jojo Mantaring, room 210, T-Th (1-3 pm), Sat (9-12 NN), 400-7432 in PGH FMAB building clinic nya

yun lang nga.... since chief neonatal specialist sya ng PGH at MaDocs, minsan oras talaga aantayin mo sa clinic nya, Pf : 550.00

Upon giving birth since sa PGH din ako nanganak siya binigay ni OB, kasi nga for observation si baby nun,..

He asked me nga if bakit sya daw ang Pedia ko eh beyond normal naman dw si baby hehe..
But now iba na pedia ko, pumayag naman sya na i-give up ko sya sa ordinary pedia nalang daw ako,

Mabait naman sya, pero iba sya sa compare to other doctor, straight to the point, walang keme keme saka magaling talaga sya. Two tumbs up

[rome01]

Yung anak ko may congenital trigger thumb,
I had her checked 2x sa two different pedia ortho. And wait daw til she turns 2 for surgery ng right thumb.
Im curious if  this is a congenital defect na possible na magkaron pa ng ibang defect later on?
Naiinis ako at parang nagmamadali yung doctor wala pa ata kami 2 mins sa clinic niya
Sayang lang 800 na consultation fee kasi hindi man lang kami kinausap ng maayos about it. Sabi lang ibalik pag 2 yr old na to see if ooperahan .
Kaya nga sa st lukes global na ako nagpacheck up thinking mas maeexplain mabuti or bigyan kami slight backround or educate on what we need to do or if we need not to worry
Kasi nga first check up niya di ako tiwala  kaya nagpacheck ako sa iba maski magbayad ako malaki. Tapis tinanong ko pa ano po ulit tawag sa condition ng anak ko, sabi nga niya congenital trigger thumb google ko na lang daw kasi parang pumupunta na siya sa door wala pa nga kami 2 mins sa clinic niya! Sa st lukes global pa ito kaya medyo appalled ako, definitely di ako sa kanya ipapasurgery anak ko..
Anyone who can recommend a good  pedia ortho?

[Chinita Princess]

Hi Sis Kharenlouisse,


Same tayo, may RHD din ako, mitral valve din ang akin pero di ako need operahan. Mild Rheumatic Heart Disease sa akin with nomal pulmonary pressure.

I was 17 yrs old nung na diagnose. Under medication nga ako. Pero before I got pregnant, sinabihan ako ng Cardio ko na itigil kung may plano magbuntis.

With God's help, naipanganak ko yung 1st born ko na maayos. Although na antibiotic sya for 7 days gawa ng nakakain ng poop nya kasi 17 hours ako nag labor pero nag end up CS din.

[jjqxiv]

Gave birth to my baby boy last July 19, 2013 (he's a preemie) and he has Patent Ductus Arteriosus. We waited for more than a month para makita kung mag-close ng kusa yung hole nya and unfortunately, it didn't. Kaya ngayon we're under medication and regular yung 2D echo namin with his pedia-cardio. We're praying na sana hindi na kami umabot sa open-heart surgery. He's turning 2 months in 6 days and he still have breathing problems lalo na pag umiiyak, hirap din ako mag-direct feeding kasi hindi sya makahinga ng maayos.

But I know nothing is impossible with Him, I know we'll get through with this. Mahirap pero kakayanin. I will do everything just to give my son a normal and happy childhood, like other kids. But of course there will be limitations pero ayoko maging "KJ" sa skanya. I always pray na sana maging normal na din lahat.