Cleft Journey

A View from Matthew’s Dad

It can be fixed!! that’s the only sentence that I kept focusing when I got out of the gynae after he was showing that our second baby was having a cleft. I had no idea what it was and still hoping it was false alarm. However, I must be prepared and the words gynae mentioned “it can be fixed” kept me going. While my wife was in shock state and crying, I was quickly went to check the surgery doctor recommended by the gynae which also happen to be in the same hospital building. Apparently, she was not available that day.

When we went back home, I didn’t say a thing but quietly googling about cleft and everything. I remember that night my wife woke up around 3AM crying and I tried to convinced her by showing her some photo of before and after result of baby with cleft. I am aware the journey would not be as easy from A to B; there would be process, steps and maybe difficulties but yes this can be fixed.

A week passed by and after collected some information, I went to few hospitals myself to see doctors. It was not easy to register and meet the doctor, as I am the husband but the related patient herself did not show up. Over there I saw and meet few parents with cleft baby waiting to see the doctor with difference conditions. Again, doctor could not say anything until they see the baby.

With some help from my younger brother in Singapore we manage to find out about Cleft and Craniofacial Centre at KK Hospital. I visited their website and it has clear information showing about the steps and processes about cleft. Instantly I flew to Singapore to visit the Centre. Convinced with the procedures explained and the facilities, I instantly decided that It might be best if my wife could give labor at this hospital as they all integrated. The next step was to find who would be the gynae that would take our case to deliver the baby since we already passed 6 months pregnancy?  We found out more through reference then we managed to meet Dr. Khoo. Meeting with Dr Khoo was such a relief for me, he was so patience explaining more about cleft and advised us few things before then took our case to deliver the baby under him. Soon we did another prenatal examination for the baby since we only had USG scan result from previous doctor.

Fast forward to 18 April 2018, our second baby was born and yes he had incomplete bilateral cleft lip and palate, which means lips and palate had a gap that need to be fixed later on. Honestly my mind was quite at ease that morning because we did not have to do anything when the baby was born. Once the doctor informed the baby had cleft, the Cleft & Craniofacial Center Department (CCC) was notified and activated so Matthew was directly transfer under their care.

Exactly at 2PM I was notified that I could see the baby in the NICU and the nurse instantly taught me how to handle the baby from feeding with special bottle and taping the mouth.  Others necessary checking was also done by related doctors such as hearing examination and general check up of the baby. The following days, as my wife had recovered from her c-section surgery she came down to see Matthew and again she was also taught how to handle the baby.

After we checked out from hospital, we then saw Dr Yeow in Dream Clinic where we have consulted and met him beforehand. Now we just need to wait until his weight reached minimum requirement for surgery and in the meantime Matthew needed to see orthodontist for regular check-up and also making his NAM.

Three months’ time was consider quite long period since we were expecting this to be fixed soon but again we were blessed that we could take care of Matthew together. Lucky he was quite a drinker and his weight grew in time although sometimes he had difficulties due to colic conditions.

When the surgery time came we were all nervous especially about the recovery process but again the doctor team was very professional calmly explain us ahead. I think my wife has shared the story about the surgery in other post.

From my side all I could say is we were so blessed that all the journey was quite smooth and I met many helpful and kind people including the good doctors, which is the key person who always guide and support us during the journey. Even Beforehand in Jakarta I was also introduced to a mother with cleft son by my close friend hearing about her journey and experiences; apparenty she also knew about Dr Yeow.

I would not go into details of what happened nor each difficulties that we were dealing when taking care of the baby because I think everyone will experience different things: like for us it was also very difficult for our first son Nathan to be away from home and school for such a long time and many other things. However what I would like to share from this experience is to never give up and discourage, it is not something you should feel ashamed nor to hide; a lot of kind people out there who would share, support, assist or give you information if you open up; and believe me it will be easier to make decisions from there.

One thing that I want to encourage is not to keep repeating or asking why this could happened and focused more on what can be done.  Of course we need to know what’s the reason a baby could have a cleft, so we could share the knowledge to pregnant women what to avoid and what nutrition to take, but when it is already happened to you, don’t be discourage, pray to God and ask for His Guidance.

In our case I am thankful that we knew this condition ahead so I could do my research, planning and be prepared earlier. When I look back now, I fell blessed as a family to have strong and caring wife, supporting parents & siblings,  patiently mother in law & her older sister as well as understanding first born son, especially in the first year when were away from our home country and went back and forth to clinic and hospital.

We know that the journey does not stop here as Matthew needs to undergo another major surgery when he is older to fix his gum; but for now we are just glad to see Matthew’s development as he is growing well and already able to say some words clearly.

 

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