Does Your Child have a Congenital Defect?

[KagamiChan]

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.

Hi sis! how's your baby nah? May I ask how big the PDA is? & if there aren't other heart anomalies? If he's a preemie, they have this med that will help constrict the vein and close his PDA. But if it won't work on that, he will be given 6months until it closes up on its own. If the PDA is still there, then they will do the close heart surgery. I feel you need to know this. Sometimes doctors won't tell you everything & it's very annoying. I too wasn't able to breastfeed really well with my son due to his heart anomalies. I had to pump all the time. But thankfully, he improved in time. His breathing is not that fast anymore compared when he was just a month old & feeding also increased. But do not push your baby if he can't finish a single feeding. Give him a few secs/mins to rest before letting him fed again. It's really like that with babies having heart anomalies. But in time they will improve naman.

Have Faith mommy! you will be your baby's strength. God bless~

[stormy_princess]

After reading all your stories, i can't help but cry. At the same time, would like to let you know that i'm with you on this thread. I just would like to share my daughter's condition and how it affects me, us and my faith.

I got pregnant at 26. Been praying everyday and almost all the time for our baby that she will be healthy and maging kumpleto lahat sa kanya. After all, she's the one i am been really praying for a long time. All throughout my pregnancy, sobrang as in sobra akong OC sa lahat. Bawa ganito bawal ganyan. Di pwede kumain ng ganyan. Sobrang careful ako. And after 39weeks and 3days, i had her via NSD. The first time i saw the picture was, there was something wrong with her feet. Pero sabi ko, baka sa position nya lang. And the following day, her pedia informed me that my baby was born with a left clubfoot. Noong una hindi pa nagsi-sink in sa akin hanggang sa nakita ko sya. We were all alone ng husband ko. My first reaction was,"why God? San ako nagkulang?"
She was in cast on the 7th day she was born until 3month before she undergo tenotomy operation without anesthesia.
I cried my heart out. Mali man pero nagtampo ako kay God. I was emotionally depressed. Wala ako makapitan kundi ang faith ko lang pero i felt na kinalaban pa nya ako. I did not go to church for months. I cried everyday. Sobrang naaawa ako sa baby ko. But then, she made me realized that life is still beautiful and everything will gonna be alright. Aside from that, she's normal and very healthy.
I seek advises on the forums and researches on my own. I kept it as a secret kasi ayaw ko na pagtawanan nila ang baby ko. At ang mas masakit pala, sa mismong kamag-anak mo pa manggagaling ang pangungutya. My daughter undergo a series of tests and casting until she reached 2yrs of age. If you will take a look at her feet now, you can see na may pinagkaiba talaga sa right. Mas malapad at medyo tabingi ang left foot nya. Mas maliit din ang left foot nya dahil sa series of casting naipit ang pag-grow at nahihirapan kami bumili ng shoes for her:)
Now, hindi na sya nagca-casting pero I am monitoring pa rin yung growth ng feet nya. Based on her ortho may possibility kasi na bumalik. But God knows, sinusugal ko ang buhay ko para lang sa kagalingan ng anak ko. Lumaki lang syang normal, mabuting tao at may mabuting puso isasakripisyo ko lahat. Lahat ng nanay kaya gawin ang lahat para sa anak nila. And with this challenge i can say that, God never left me kahit ng mga panahon na tinalikuran ko sya. He is and always be my fortress. And just like my daughter, He is always be my strength, my inspiration and my miracle.
For all of these things, let's just hold on to our faith and God knows what's best for us.

Sorry sa napakahaba kong story:)
 

[Judy F. Ercia]

Hi sis,

It's my first post here and when I told my husband about this thread he asked me to reply as maybe I could somehow help ease the burdens of families who have babies with congenital defects

I am on my 34th week of pregnancy and during the 12th week, baby was diagnosed with anencephaly, it is a condition wherein baby's brain was not developed or totally no brain.. the OB here in Singapore were we are staying gave us an option to decide within the week if we wanted to terminate the pregnancy since they considered anencephalic babies are incompatible to life (they can live in the womb but they cannot survive the outside world). We were so devastated on the thought but of course, we wanted to keep our 1st baby and we dread on the thought of abortion.
We sought for a second opinion and the next OB saw in his scan that there is a head, he put a question mark that baby is anencephalic and he asked us to wait for the 5th month for a detailed scan. On the 5th month detailed scan it was concluded that baby's condition was called microcephaly which means baby's head is smaller than normal. The OB told us that the worst case is that baby will be mentally challenged and we just continue to pray that it will turn out to be the best, small head but mentally capable.
For the past months our life and our faith has changed, we remain faithful to God hoping and praying that HE will give us the miracle needed for our baby. We feel that God's grace is working on us since we still live quite a normal life despite what we are going through. Our churchmates are telling us we are being an inspiration because of we are showing how strong our faith is to God despite the circumstances. We keep on telling ourselves that God has better plans for our family and that He will not give us trials that we cannot endure. Of course there are still moments of weakness and doubt but during these times, all we can do is PRAY because at this moment there is nothing that we could do but to entrust everything to HIM.
May God bless our babies nad let's always remember that we are created on the image and likeness of God so everyone is equal.

[KagamiChan]

Hi sis,

It's my first post here and when I told my husband about this thread he asked me to reply as maybe I could somehow help ease the burdens of families who have babies with congenital defects

I am on my 34th week of pregnancy and during the 12th week, baby was diagnosed with anencephaly, it is a condition wherein baby's brain was not developed or totally no brain.. the OB here in Singapore were we are staying gave us an option to decide within the week if we wanted to terminate the pregnancy since they considered anencephalic babies are incompatible to life (they can live in the womb but they cannot survive the outside world). We were so devastated on the thought but of course, we wanted to keep our 1st baby and we dread on the thought of abortion.
We sought for a second opinion and the next OB saw in his scan that there is a head, he put a question mark that baby is anencephalic and he asked us to wait for the 5th month for a detailed scan. On the 5th month detailed scan it was concluded that baby's condition was called microcephaly which means baby's head is smaller than normal. The OB told us that the worst case is that baby will be mentally challenged and we just continue to pray that it will turn out to be the best, small head but mentally capable.
For the past months our life and our faith has changed, we remain faithful to God hoping and praying that HE will give us the miracle needed for our baby. We feel that God's grace is working on us since we still live quite a normal life despite what we are going through. Our churchmates are telling us we are being an inspiration because of we are showing how strong our faith is to God despite the circumstances. We keep on telling ourselves that God has better plans for our family and that He will not give us trials that we cannot endure. Of course there are still moments of weakness and doubt but during these times, all we can do is PRAY because at this moment there is nothing that we could do but to entrust everything to HIM.
May God bless our babies nad let's always remember that we are created on the image and likeness of God so everyone is equal.

Hi sis, I salute you and your hubby's Faith. IT is in Faith, that miracles happen. Don't let go. The journey is quite long, but it is worth it. Having Faith does not mean, being free from pain & troubles. It is actually, the birth of peace in the midst of pain & troubles.

Like you, my baby also has a congenital defect. But, this is due to the german measles I contracted during pregnancy. He's a multiple anomaly baby. We've been to different doctors that also tried to crush our hope that he will be able to live the life we wish for him to have.

My baby is turning 10months on the 5th. So far, he has beaten the odds. Especially when we knew how thin his umbilical cord was. My OB, as per her description, thought that the cord will snap due to the thinness of it. Parang telephone wire nalang, tapos may coil pa. Up to now, my OB would call him, a miracle baby. When he came out at 36weeks & 2days, had an apgar score of 8,9. Did not 1.3kilos but did not require oxygen or NGTube.

God is so good. He is able to work into the situations we have, as long as we surrender into His Will. After all, we do not own the life that we have now.

I'm praying for your baby, & always believe that God's work is for a greater purpose. Sometimes, this means to make a change in our lives to make it a better one. God bless!

[mariebiscuit]

hi mommy judy and mommies ,,,your baby was diagnose as microcephaly...mean maliit ang utak nya sa normal,well saludo ako sa tibay mo mommy,,,actually you are lucky enough dahil kahit paano buhay si baby and with your love and support and faith w/ our Lord ay naiibsan ang dalamhati nyo...dahil iyong iba na nanganak anencephaly naman,,mean nakalabas ang utak,salat o kapos sa bungo,,kadalasan naaawa kami sa baby kahit good cry,hindi sila magtatagal,but still we give outmost care untill heartbeat stops,or the family decided na iuwi nalang si baby habang buhay para makasama nila..some are walang butas ang pwet so need operation for colostomy,and high rate naman ang survival,,worst is case na gastroschisis o nakalabas ang bituka ng baby,marami pang cases,,but love and support usually ang
 kailangan nila,,ika nga love conquers all....keep up mommies,,,

[mariebiscuit]

hi mommy judy and mommies ,,,your baby was diagnose as microcephaly...mean maliit ang utak nya sa normal,well saludo ako sa tibay mo mommy,,,actually you are lucky enough dahil kahit paano buhay si baby and with your love and support and faith w/ our Lord ay naiibsan ang dalamhati nyo...dahil iyong iba na nanganak anencephaly naman,,mean nakalabas ang utak,salat o kapos sa bungo,,kadalasan naaawa kami sa baby kahit good cry,hindi sila magtatagal,but still we give outmost care untill heartbeat stops,or the family decided na iuwi nalang si baby habang buhay para makasama nila..some are walang butas ang pwet so need operation for colostomy,and high rate naman ang survival,,worst is case na gastroschisis o nakalabas ang bituka ng baby,marami pang cases,,but love and support usually ang
 kailangan nila,,ika nga love conquers all....keep up mommies,,,

[Judy F. Ercia]

Thanks Sis mariebiscuit and Kagamichan, it is really a tough moment in our lives wherein our faith is being tested.

sis mariebiscuit, my son was initially diagnosed with anencephaly during the 12th week and was later change to microcephaly during the 5th month.

sis Kagamichan, we will also include your baby in our prayers, let's always keep the faith and always remind ourselves that God has a purpose why we are in this kind of situation.

thanks sisses and God bless us all!

[mselerio]

Hi Sis, time to share mine :-)

Back in March 2013, I was 7 months pregnant when my OB/Sono noticed a "double bubble" on my ultrasound. Normal ultrasound of baby's tummy should show only single bubble (baby's stomach) but mine was showing "double bubble". My world almost collapsed when I learned that my baby may need a surgery immediately after birth to correct this congenital defect. Few more ultrasounds almost confirmed an intestinal problem and OB referred us to see a Pedia Surgeon. Pedia surgeon mentioned 3 possible causes of the "double bubble" syndrome, duodenal atresia, malrotation or annular pancreas. Since we found out about the "double bubble" on my utz, I searched for info on the net and found out that it's mostly associated with duodenal atresia. It scared me to death what I read about DA, that 40% of DA babies are with DS (Down Syndrome), that DA usually comes with other combo birth defect with heart problem being the most common, and yes, baby will need to undergo surgery within 24 to 48hrs after birth. My hubby and I were devastated upon learning all these ( which pedia surgeon also mentioned to us) and we only found peace and comfort through praying to HIM. I only read 1 DA case from one mommy here in GT and her baby was born before 37 weeks with a heart problem along the DA, and after 2 surgeries, baby died after few days :-(   We prayed to God and asked for mercy, we went to St Pio church and prayed for a miracle.  On May 19, I gave birth to my baby boy, full term naman sya at 6.1lbs ang weight nya. He looked normal in every way, but during his first few hours of his life, he was showing already the symptoms of babies with DA :-(  So, on his day 2 he underwent this surgery to correct his duodenal atresia, he stayed in the hospital for 3 weeks with 18 days spent in the NICU. That 3 weeks were the darkest days of my life :-(  with his very small and fragile body puro pins and needles ang bakas sa katawan nya :-( he was also on phototheraphy for almost 1 week at tumaas ng sobra ang bilirubin nya. The Neonat even suspected that he had Biliary Atresia due to very high bilirubin levels, grabeh ang fear namen every time mag uundergo sya ng mga labs and tests. Because of his surgery, he cannot eat and was on IV, he was crying almost whole day at gusto magsuck kaya he was given pacifier na lang. Nakakadurog talaga ng puso whenever we see him, everyday oag nagvisit kame sa kanya sa nicu, nag pra pray ako with him. Finally, after 3 weeks naiuwi namen sya, he was small, dark and weighed less than half a kilo compared to his birth weight. Fast forward, now Oct 20, exactly 5 months after ng surgery nya he looks a very happy and normal baby :-) he has gained weight and grew taller and looked big than a regular 5 month old baby. And I forgot to mention, when he was born, wala syang hearth problem and hindi rin sya DS baby :-) the only problem lang talaga was his intestine na may bara. I still cry whenever i look at his old pics taken jn the nicu but very happy and grateful to God as He heard our prayers. God is really Good! Just pray and lepave everything to Him, sabi nga nila, when you pray, an exchange happens, you give your worries to God and God will give you peace :-)

[alyBaba]

It's been a while since I last posted here about my baby having congenital defects. Unfortunately, she didn't make it. She died at exactly one month after her birth. Cause of death was because of the 2 holes (vsd/asd) in her heart, but there were a lot complications like failed kidney, penumonia, etc etc. enumerating it just brings back sad memories. o well. If there's one adv is I am a looot stronger these days. I mean, whenever my (other) kids get sick, I just shrug it off and don't worry much unlike before.

[simplykristine08]

^ Sorry for your loss, sis.

Baby ko naman had Ankyloglossia or tongue tie. Hindi to nabanggit sakin ng pedia after I gave birth, siguro hindi nya napansin or hindi nya masyadong chineck. Naka ilang pedia din kame until napadpad ako kay Dra. Aliwalas, neo-natal pedia sya. At first, nagtataka sya bakit sakanya ako nagpapacheck up, kadalasan daw kasi mga premature babies ang nagpupunta sakanya. Pero sya ang nirefer sakin ng nurse ni baby nung pinanganak sya. First check up namin, sya ang nakapansin na tongue tie ang baby ko. Nirecommend nya din na dapat mapa opera para hindi mabulol or magkaron ng speech problem habang lumalaki. Kaya pala bago maoperahan ang anak ko, ang lola nya is yoya. may mga letters and words na bulol ang mga tongue tied na bata. before mag 2 yo ang anak ko, nag undergo na kame ng minor operation. i was with him the whole time, karga ko sya nung binigyan sya ng general anesthesia. after 10 minutes, tapos na ang operation. thank God, okay naman. masigla naman sya after at wala naman naging problema. Supposed to be, dapat ata pag nalaman agad na tongue tie ang bata after ipanganak, kina-cut lang saglit eh. pero dahil malaki na ang baby ko, kelangan na may anesthesia.

pero grabe ang dasal ko neto, kasi kahit sabihing simpleng procedure lang, nakakatakot pa rin na sumabak ang anak ko sa ganyang klase. okay na sya ngayon, wala naman speech problems.

[gharz412]

while reading all your post here i can't help but to share what we've been through and consider this as an inspiration that with GOD nothing is impossible. I gave birth last Oct.25 to our baby boy when the dr. told me that my baby needed to stay for another 3days in the hospital due to a high infection in his blood and also UTI i was devastated because i know that i didn't do anything harm to our bundle of joy so we also stayed there for another 3 days and luckily my baby went well after that so we went home after 6days of staying in the hospital. After a few days the NBS center called us and asked us to come back for another test since they found out that my baby could possibly have a Congenital hypothyroidism i didn't  have an idea about that so i asked my nurses friends and do some research only to find out that my baby can possibly be mentally retarded. I really cried so much i even asked him why my baby since i didn't do anything bad or something that could harm him since he was in my tummy. He was our everything so i almost got crazy i'm just so lucky that my hubby was there and told me that there's a cure and there still a second time for the test which means that there also not sure about the first result in his NBS. The next day we went to the hospital to do the test again we really prayed for our baby. The next day we called the personnel in the NBS center and asked them about the test result of our baby for the second time and she told us there's nothing to worry about because the result was just within the normal limits.  We really felt so relieved and we asked the dr. about his case. He told us that my baby's case was really a miracle.  Now my baby is 5 month old and he knows how to count with his own language so to all mommies never lose hope just always and leave it all to him....

[ReignShannon]

hi.. im new here and as i read ur post sobra akong naiyak. that was 2008 pa so ur baby is about 5 years na.. hows she.. my baby was diagnosed with CH mag 1 month n sya kaya sobrang wory ako since late na [textspeak!] gamot...

[gharz412]

ReignShannon
« on: Today at 08:03:04 am » Insert Quote

hi.. im new here and as i read ur post sobra akong naiyak. that was 2008 pa so ur baby is about 5 years na.. hows she.. my baby was diagnosed with CH mag 1 month n sya kaya sobrang wory ako since late na [textspeak!] gamot...



_girl hindi ba siya nretest?... How's your baby now sis?

[Kim]

I'm 11 weeks pregnant with my first baby. My husband and I are in our late 30s, and this pregnancy wasn't planned at all. But when it was confirmed, we were happy nonetheless.

Yesterday, I went for a quick consultation with an OB at the office clinic (not the OB I usually go to) because I had brown blood spotting. After an ultrasound, the OB confirmed that the spotting was nothing to be worried about. However, she noticed that there was something like tissue mass on my baby's head. She was confident that it was a congenital defect, probably MENINGOCELE. I was also told that there was nothing I could do about it at this point. I'll have to wait for my 20-24th week to have an anomaly scan. The best that I could hope for was for a lesser extent of the damage.

The news has been so depressing for me and my husband. I've been reading all I could find out about meningocele since yesterday. It feels kind of masochistic, but I just have to know.   Of course, we're still hopeful that everything would turn out well for us. That is why we'll be seeking a second opinion asap.

Anyway, I'm just glad I found this thread. The stories here give me hope.

[emmylou]

Hi mga sis,


Naiiyak ako sa pagbabasa ng thread na ito. I remembered my family's journey. My son was born with a tongue tie. Nagupit ni Dr. Macapanpan-Sison. May mga nagsabi sa aming dapat general anesthesia siya even if he is only 5months old. I was scared noon. Buti na lang I met Doctora. I lost my second son naman due to miscarriage. Sa youngest ko dito na talaga nagsimula. Hindi ako nahirapan sa kanyang magbuntis. The thing is at 3rd month of gestation, nagka german measles si papa niya. Confirmed ng test. We are very scared na baka kung ano ang wala sa kanya. We were prepared for the worst. We kept on praying. I was asked by my OB on my 6th month to undergo congenital anomaly scan. It normally would take only 30-45mins. But I was inside the room for 2 hours. Nakakatulog na nga ako. Tapos sabi ng Sonologist, come back in a week. Do alot of walking para umikot si baby. I was not scared pa. I thought hindi lang makita ang gender ni baby. But same results after a week. The result was my baby had congenital diaphragmatic hernia. She told me to pray. Natakot ako. I went to my OB with the news and she was very worried. Kita mo talaga sa Mukha ni Dr. Osilla na may kakaiba. She asked me to have my 2nd congenital anomaly scan sa MADOCS after 2 weeks. Hindi ako makapaghintay at mapakali. I had it done sa In My Womb sa Makati. I was in shock ng sinabi ng Sonologist na tanggapin ko na lang kung anuman mangyari sa anak ko pagkapanganak ko. Grabe iyak ko sa foodcourt ng Landmark. Hindi ko talaga kinaya. I'm 6months pregnant and my baby will just go like that. Iyak ako ng 2 hours tingin ng tingin mga tao. Binigay ko na ulit ang resulta kay Dr. Osilla. She told me kung ano ang plan nila. Mas feasible daw na manganak ako sa Hospital of the Infant Jesus since they are in teams when they handle cases. Hindi sila individual doctors. They would come as a team. I agreed. Came May 5, 2011, the date I chose to gave birth, the whole team was there. May Pedia-Cardio, Pedia-Pulmo, Neonatologist, Pedia-Surgeon, Pedia Anes and my OB. Kahit na kelangan lang namin ay Pedia Surgeon, pero kumpleto sila doon. Kaya kung kelangan ng isang specialist hindi na nila tatawagin at hihintayin. Ang galing nila. My baby came out crying, so they ruled out congenital diaphragmatic hernia. Kasi wala daw dapat voice si baby. Hindi natuloy operahan si baby. They have observed na may mottling siya at nag violet na ang lower extremeties ni baby. They placed her on heart medications, sedated her and on a ventilator. Prognosis was bleak. We had her baptized within 3 days of life kasi malabo na talaga siyang mabuhay. After her baptism, lumakas si baby. We stayed a total of 15 days in the said hospital. Pero dahil ang laki na ng bill namin, we had to transfer to a public hospital which is Jose Reyes with the guidance of our Dr. Rafael Dizon. Naoperahan si baby doon. May endo something cyst si baby. Nakalimutan ko iyong term. Puno siya ng tubig na naka attach sa stomach ni baby. Nag inflate ang left lung niya after the operation and was extubated a few days after. She was finally discharged June 30, 2011. Almost a month din siyang naka ventilator. Several blood transfusions were done. But it didn't end there. She kept on having gastritis, pneumonia and bloody stools. 2 years siyang ganun. Tapos nadetect last  January 2013 na may problema siya sa tyan sa Makati Medical Center. But since mahal na naman at bumabawi palang kami sa financial namin, nag research kami. Kahit may parang charity ang Makati Med, aabutin pa rin kami roughly ng 150k. Na research ko sa UST may OPD pala sila, para rin silang charity. Naoperahan si baby at ang final diagnosis is iliac duplication cyst. May pouch like na bituka na sobra kay baby. Bago siya operahan, kelangan niyang palaging salinan ng dugo. After her operation, nag normal ng lahat. She is now a happy 4 year old tyke attending nursery school. I'm so happy na nakatapos na rin kami sa sakripisyo na ganun. Faith talaga ang sinandigan namin. We almost lost her several times. Pero Padre Pio and God, syempre Jesus never let us down. Nakakaiyak pag binabalikan ko siya. Pag naaalala ko. What we have to go through so she can live. Kapit lang tayo palagi. Sorry sa mahabang post.

[sarsingkit]

My baby boy was born with down syndrome and upon hearing the news (a few minutes after he was born), my heart was broker into a million pieces. Sobrang sakit. Ang dami ko tanong , bakit kami, bakit sa amin ni hubby to nangyari. We are just ordinary people, etc. Like some here, parang ayoko tuloy muna tumanggap ng bisita kasi ayokong maawa sila sa amin and maiyak na lang ulit ako. There is not one day in the past two weeks na hindi na lang ako biglang naiyak. Naka counselling pa ako sa lagay na to ha. Lagi kong sinasabi kay God na talagang mahina ako at hindi ko na kaya, so I hope that he help as always as a family. Napakachallenging magkaroon ng anak pero mas greater challenge pa talaga yung binigay ni God sa amin. Nilalakasan ko na lang talaga yung loob ko para kay hubby and para kay baby.