Saturday 10 November 2012

My Journey of Breastfeeding Down Syndrome and Cleft Palate Baby

Breastfeeding is POSSIBLE for baby with Down Syndrome and Cleft Palate 

Having pregnant with my second child was the most happiest moment of my life. I love being pregnant and hope to get pregnant again. Praises to All-Mighty, giving birth to Rayhan was fast and easy. Rayhan was born on 18th May 2012, 11.32 am at 2.6kg. It was the most defining moment of my life but this is just the beginning of my story. The pediatrician told us a shocking news that our son is having Down Syndrome. I didn't cry until the moment i held him close on my chest. I cried and cried even more when the pediatrician diagnosed Rayhan with cleft palate and other complications. My heart sank! What have i done to make him be like this? What have i done?? I didn't want to believe and hoping for miracle..i was in a black hole.. I didn't want my son to be like this.. But later after a hard loud cried, i hold him again and hear him telling me " LOVE ME, LOVE ME PLEASE, I KNOW I'M NOT WHAT YOU EXPECTED BUT PLEASE LOVE ME!...and from that on wards i know i need help from many doctors, specialist and support groups but what i need most is to follow my MOTHERLY INSTINCT and love my son unconditionally.

As a mother, I wanted so much to breastfeed my son but I was refrained from my doctor to do so because direct latching could cause my son to get chock due to his cleft palate. Again, I was heart broken! I cried and cried the whole night. I refused to give up and listen to my motherly instinct instead. I  kept myself awake every one hour to pump out my "Golden Colostrum Breast milk" . And there it was just a few drop of my "Gold" with the intention to feed my beloved child. And i keep on pumping and pumping until i was able to yield 5 oz per session!


We never thought that we are going bring home a Down Syndrome and Cleft Palate baby. 
At day 4, Rayhan was admitted to the Hospital Sungai Petani, Kedah for jaundice. His weight dropped to 2.4kg and it didn't increased until a month later. I was exhausted! It wasn't easy to feed Rayhan using cup and 'special bottle' design for cleft babies. Rayhan drank 2oz in 1 hour!! It goes on until 2 months old. Rayhan has difficulties in sucking milk and sometimes milk came out from his nostril. I cried and cried when ever i see him having such a hard time.  "Rayhan, how I wish I could take over your pain"! 

As time goes by, Rayhan has recovered from Jaundice and his white blood cells has increased (he was suspected having Trombosytopenia), 2 holes in his heart has eventually closed by itself and finally his undescended testis has drop down to the 'right location'! Alhamdulillah, All-Praises to Allah.


Today , Rayhan is 5 months old at 6.1kg. He drinks 5oz (just in 15minutes!) of Mummy's breast milk every 3 hour daily and sleeps trough the night. He goes for his Occupational Therapy once every month (which is insufficient for him) therefore we have stimulate him more by interaction play and tummy time. Alhamdulillah, he is able to role over at age of 4months old. "Awesome job dear Rayhan!"


Alhamdulillah, now my milk supply is enough for both Rayhan and Rayyan. I will keep on pumping to feed both them until reaches they reach 2 1/2 years old.  InsyaAllah. 

We are so proud of him and will never ever change his 'Extra Cells' for anything else! His extra cells keep Us ALIVE!  

Dearest baby RAYHAN, u r beautiful! Daddy, mummy n big brother Rayyan love u dearly. MY SONS, U COMPLETE ME! !



Muhammad Rayhan Rafiqin -5month old & Muhammad Rayyan Rafiqin 20 months old 

** If you think Rayhan is an AWESOME boy , please click LIKE ,SHARE  & BECOME MEMBER of this site  ! tq  

**** En. Ahmad Redzuan bin Abu Hasan, Thank You for being such a wonderful and supportive husband. This journey will not be smooth as it is without you by my side! Thank You dearest hubby for being an 'AWESOME Husband and Daddy!'


*** thank you to sis Farah Shaklee for introducing Shaklee to me (credit my 10oz milk to u!) and thank you to sis Nurul Aida Ismail (CLAPAM) for supporting me in breastfeeding cleft palate baby . Special gratitude to all my beloved family , in-laws, teachers and Facebook friends for making prayers for Rayhan. Love U All! 

10 comments:

  1. A baby is Allah most precious gift for us no matter what their condition are. Will support you throughout your breastfeeding journey. Hug n kisses for your heroes :)

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    1. Thank you for your kind words! Yes, they are very precious to us. Do you hv any children? :)

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  2. Layari ikhlasfillah.blogspot also ada cite bb down syndrome and breastfeeding

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    1. Salam sis annur fitrah. congratulation dpt DS bby juga.. They are heaven's child and special to us kan..Hope u can keep on sharing with me your experience bringing up a DS child ya. :) love to hear from u again.

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  3. alhamdulillah, your son rayhan is such a perfect little child :) May Allah protect him always :)

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    1. Assalam sis. Thank u dear. Yes he is such a perfect child. Do u have any children? May Allah protect ur family too :)

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  4. Allah only give the test to those who are able to go through. This is such an inspiring story.Keep it up!

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    1. insyaAllah dear.. May Allah give us more strength. Thanks dear. do u hv any children too?

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  5. tahniah puan,hebat sungguh puan.
    semoga Allah swt mempermudahkan setiap jalan kehidupan puan sekeluarga.
    rai berkerja selalu dikelilingi kanak-kanak DS,dan kebanyakkan dari depa otaknya lebih bijak dari biasa.
    honestly,hanya ibubapa yang hebat sahaja diberi kelebihan ini.

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  6. Assalam sis. Semua ibu di dunia yang ada anak adalah hebat.. semoga Allah memberkati ur family too. Wow, salute u dear..not everybdy loves to worrk with DS children. Where are u working?

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