Cleft Journey

The Care

We have been fortunate that we have known earlier about Matt’s condition so that we can prepared ahead. One in every 700 babies are born with a cleft, just like my boy, with parents that will do anything, just like us. Somehow, I must say we are blessed.

At KK Hospital, Matthew is well taken care of, we are trained by the Cleft & Craniofacial Center special nurses on few basic important things :

  • Feeding : apart from any cleft conditions the most first important things is that the baby must be able to get his/her milk intake. While some baby able to do breastmilk directly for Matthew we use a special cleft lip bottle to do the feeding. This bottle is specially designed for the proper feeding of babies with cleft palate or poor sucking strength.
  • Burp : Burping the baby is a must and we should do it more frequently
  • Taping : Taping the cleft lips with special tape is to maintain the tension for the gap to help bringing everything together for later surgery purposes. We have to change the tape after every feeding. Other than that Matthew was like any other baby.

tape

Few days after discharged from hospital, we went to bring Matthew to see Dr. Vincent Yeow and he explain that Matthew needs to perform a lips surgery as well as the palate surgery; but before that we need also to see ENT and Orthodontist as Matthew needed to put a Nasoalveolar Molding (NAM).

I’m not claiming our journey was easy, for the first 2 months especially we did have sleepless nights and lots of crying involved. He had colic which I never experienced before, which disturbed him during night time and reflux. After feeding, it often shooting out through his nose from the gap in his palate. Sometimes he had cheek rashes too which may bleed a little because of the tape that we had been putting on to him for 24 hours. No matter what, I tried to be the best mom I can be.

Honestly, I’m quite frustrated and struggled in putting a NAM to Matthew during that time because it kept falling off and I couldn’t bear to make him cried more. Every single night, he had been crying nonstop and disturbed his sleep because of his colic conditions. The most peaceful days for both of us were during day time. I maybe sound selfish as I’m not doing my job properly by not putting his NAM often but it’s exhausted and stressful. I came back to visit Dr. Yeow for his advice, he said in Matt’s condition that NAM will only put on because to make his nose nicely done later after the surgery. Thus, I tried my best to put on the tape as nicely as possible and change the tape often to make sure the gap is reduced. For those not so familiar with a child’s cleft journey, the taping on his face is the first step in molding and expanding the upper lip tissue so his surgeon has lots to work with. Its amazing a little tape can do!

During his 3 months old, Matthew started to smile and laugh more often which brighten my day so much. He started to interact, giggle and showed his sweetest smile, that on that few seconds, I am completely forgotten that he had cleft lip. He was just as perfect as it is.

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