Having a baby with multiple congenital anomalies... how were you coping?

[Kagami-chan]

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I have a son with multiple congenital anomalies (due to a rubella infection during pregnancy) and he's our 1st baby. It was hard at first, hearing the news that I am pregnant and at the same time hearing the disadvantages of being infected with rubella measles while pregnant (affects baby's mental development, heart, eyes and causes deafness). It was my 1st pregnancy and did not even have any knowledge of what it's like to be pregnant and how to take care of a baby, and now I have to handle a very special baby that needs intensive care. Before he was even born, he has already been tested and been striving through his journey to his birth.

At first I was on denial then blamed myself and asked why it has to happen to me. If it weren't for faith in God, my husband's constant emotional support, a family who are praying for me and my little one and a doctor who has been taking really good care of me and the baby, I would have had sunk into the pit of depression and would have caused more damage in my son's health. I was at loss, and was scared what might be the baby's outcome be or if he would ever breath his first breath and I would hear his first cry. I am just so thankful that at the midst of fear, we did not lose sight of hope. God has always been there to protect this precious little one.

To sum it up, my son has congenital cataracts, 4 heart anomalies (3 holes & a tricuspid regurgitation), an IUGR baby (although he was born near term 36weeks and 2days he weight 1.3k or 2.87lbs only), his toes looked like they overlap each other but not sticking together. He was also born very anemic, but was able to improve since then. We are still on line to check his hearing condition.

Coping up took time, but was able to adjust since I've prepared for his conditions since I got pregnant with him. All the doctors appointments, and different specialists we need to visit, and surgery we need to prepare emotionally, mentally, physically and of course financially... is taking it's toll. But this does not hinder us from enjoying our little one moment by moment. Even the sleepless nights can't hold us down.

How about the other mommies? how are you able to cope up?

[Kristiano]

akong kaila, first born nila, with a hole in their baby's heart... i forgot the details but nakagasto sila ug 1M++.. nya mga fresh graduates pa mi.. maau nlng naay mga igsoon sa gawas nkatabangtabang hinoon sa gasto and with his family's help also... krn tulo na ka anak... we'll pray he will be better sis..

[Kagami-chan]

akong kaila, first born nila, with a hole in their baby's heart... i forgot the details but nakagasto sila ug 1M++.. nya mga fresh graduates pa mi.. maau nlng naay mga igsoon sa gawas nkatabangtabang hinoon sa gasto and with his family's help also... krn tulo na ka anak... we'll pray he will be better sis..

Thanks kaayo bro. Yep, mahal na siya basta Open Heart Surgery. Ang quote sa amo pedia cardio is P700k+. Ang hole siguro sa iya heart is inside. Sa ako anak is 1 vein open naa rana sa gawas so close heart surgery siya. The other is inside but he has 4yrs for it to close before mu decide ug OHS.

[ad_dur]

kasabot jud ko nimo TS my 2nd bb premature pag 7 months ni gawas siya pwerte gamaya murag 1 liter na botlle sa coke. Ang pedia diagnosed her with heart problem naa daw buslot iya heart ug pusod pwerte naku guola sige gud ko simba ad2 ask ni Lord na salbaron lang jud ang bb. Pag 1 year niya amo gipa check iya heart. Lipay kaayo mi pag ingon sa doctor na OK ra ang hearts sa bata. Nothing is impossible ni Lord TS. pray lang sige. Kami sa akong wife sige mi sa Redem. Pero naka gast jud mi ad2 ug 470k kay na incubate man ang bb for 2 months.

[Kagami-chan]

kasabot jud ko nimo TS my 2nd bb premature pag 7 months ni gawas siya pwerte gamaya murag 1 liter na botlle sa coke. Ang pedia diagnosed her with heart problem naa daw buslot iya heart ug pusod pwerte naku guola sige gud ko simba ad2 ask ni Lord na salbaron lang jud ang bb. Pag 1 year niya amo gipa check iya heart. Lipay kaayo mi pag ingon sa doctor na OK ra ang hearts sa bata. Nothing is impossible ni Lord TS. pray lang sige. Kami sa akong wife sige mi sa Redem. Pero naka gast jud mi ad2 ug 470k kay na incubate man ang bb for 2 months.

Ana gyud na bro, basta preemie. They are prone to PDA or any CHD kay kulang paman sila sa buwan. Kung PDA to ang prob sa imo baby, naa daw meds nga i-tira sa doctor para mu close to siya. Have you asked the doctor about it? Sa ako anak, di man siya pwede ato na med since he's a Near Term baby. Di daw mu work to nga med sa iya. So nag wait mi kung mu sira to siya nga open ugat sa heart. Pero karon 5months nah siya wala pa gyud ni sira and ni ingon na ang Cardio di na daw na mu close so mao nga operahanan siya puhon.

Mu tuo gyud ko ana bro nga walay imposible ni God. Sa pag buntis palang nako, we already thought nga ma kuha siya, but sige ko ato pray gyud nga unta di siya ma unsa. We're so thankful lang kaayo kay nalampasan niya tanan nga amo na agian pag buntis palang nako niya. Plus! Iya pa gyud umbilical cord kay naa portion about 10cm to siya nga pareha na ka nipis sa telephone wire! imagine... Pero ako baby pag gawas kay dako kaayo ug hilak nya he's active pwerabuyag lang intawn.

[Bricksand]

I feel you TS and I admire your courage. I will be praying for a successful surgery. God is good!

[Kagami-chan]

I feel you TS and I admire your courage. I will be praying for a successful surgery. God is good!

Thanks sir, hopefully soon ma ok ra intawn iya surgery. God is indeed good, all the time!

[sugbuana]

Di jud lalim imu gi agian TS. God is good. Keep praying mao gyud nay gi ingon na basta pregnant pa gani extra careful jud ang mga mommies. Naa koy aunt, at 6months nagka measles pud. Ang effect sa baby kay mute & deaf ron. He's 7 yrs old now, so far ni improve ang bata because of therapies.

[Kagami-chan]

Di jud lalim imu gi agian TS. God is good. Keep praying mao gyud nay gi ingon na basta pregnant pa gani extra careful jud ang mga mommies. Naa koy aunt, at 6months nagka measles pud. Ang effect sa baby kay mute & deaf ron. He's 7 yrs old now, so far ni improve ang bata because of therapies.

Mao gyud na ang ig-on sa measles sis... Kami kay pa check pasad mi sa iya hearing ig Aug pa amo appt sa Manila Hearing Aid sa SM. Di man siya mu respond sa sounds, pero sige baya siya ug make ug different sounds nya iya cries kay lahi2x sad. I hope naa lang unta siya gamay ma dunggan kay grabe na gyud sad iya naagian. Di pa siya maka kita tungod sa iya congenital cataracts.

[Kristiano]

5months pa na sis... let's hope and pray na delay lng ang ubang development... Nothing is impossible with God and prayers...