C.L.E.F.T - Courage.Love.Enthusiasm.Fabulous. Transformation

Hi...

I meant to share with you about my 3rd child, Faiez in my 3rd entry, BUT ... something important came up that I just had to share with you about my 4th child, Maisarah, whom we call Sarah. Sarah is special. You'll know why if you continue reading.

When I conceived Sarah, we were at that time living in Melbourne, Australia. My husband was doing his sub-speciality in Neurosurgery and worked as a registrar at the Royal Melbourne Hospital for a year. So we always joke around that Sarah was Made in Australia. I took unpaid leave from my job in Malaysia and became a housewife in Australia. My sister called it 'Domestic Goddess'.

I was still breastfeeding my 3rd child who was about 14 months old when I found out that I was pregnant again. It was quite a challenge for me being pregnant away from my other family members, breastfeeding a child and having no maid or helpers to help me out with the daily housework and chores. But I think I did the best that I could. And my two older children and husband were helpful when needed.

Sarah

My first ultrasound scan was when the baby was about two and a half months. Everything was normal then. My second ultrasound scan was when the baby was about 5 months. The doctor took a very long time scanning my belly this time. I think I was with him for about an hour or so. After that he asked me lots of questions about my family history right down to my grandparents. He asked me about my husbands side too. It was quite an experience.

Finally, after much Q & A, he told me that based on the scan he saw that my child... a baby girl (what I wished for) has got a cleft lip. He informed me that he doesn't know how severe the cleft lip is because he can't see inside the baby's mouth through the scan. I was shocked, but I kept my cool. I wanted to cry but was embarrased. I pretended to listen as the doctor explained what it means ...cleft lip and palate. But my mind was already elsewhere. Only God knows what went through my mind at that time.   

After the appointment, I went home. But before arriving home, I went to a nearby park and sat on the bench. I was numb. I cried and didn't know what to do. I called my mom in Malaysia and told her about it. She consoled me and asked me to pray to Allah for guidance and to never lose faith in Him. I felt better after that. Then I called my husband and told him about it. He was disappointed, but told me to pray, as there is nothing much that can be done except hope and pray that the baby's condition is not so serious.

Once the 'why me' and 'blame me' phase was over, I was more prepared to face the challenge that Allah has set for me. I began to 'google' anything and everything I could about cleft lip and palate and educated myself about what to expect, management and caring for cleft babies and children. When I returned to Malaysia a month later, I contacted CLAPAM... Cleft Lip and Palate Association Malaysia ... to find out more and met up with one of their representatives to get more information, guidance and support. CLAPAM was very supportive. When I returned to work, at first I didn't want to tell anyone about my baby's condition. I only told my immediate boss, the Head of Department. She was very understanding and supportive. But slowly, i began telling more and more people...people that I trust. One of my friends whom I considered like a big sister to me told me this ...

"God loves you and he would not set challenges for you if he knows that you cannot face it. He only set challenges that he knows you are capable of facing. So don't worry, you'll be alright." 

Those words made me felt a whole lot better. So much so that I can't wait for the baby to arrive.

Giving birth to Sarah was the easiest among all the others. When I first saw her, I thanked God because her cleft lip was mild and later we discovered that her hard palate was not affected, just her soft palate. I fell in love with her straight away and I felt so protective of her.

Smile...

The next day, when I had regained my strength, my challenge in caring for her started. Feeding her was a big challenge as I can't breastfeed her directly. I had to express my breastmilk and give to her using a special softplas bottle which can be squeezed to assist milk flow. Sometimes I have to use the syringe. I have to make sure that milk doesn't come out of her nose or ears, so I had to position her right in order for that not to happen. I had to ensure that she reaches a certain weight by the time she is 3 months old to qualify for the lip repair surgery. I had to make sure that she doesn't fall sick especially flu as this will affect her ears and nose. If she is ill and underweight, she can't go for lip repair surgery. Fortunately, I was already back home in Malaysia, so I had lots of support from my family members and also I had a very good maid who helped me take care of my children.

At the tender age of 3 months old, Sarah had her first plastic surgery to repair her lip. We joked that only Hollywood stars go for plastic surgery and here we have our Sarah, at 3 months already going for plastic surgery. The surgery went well. The doctor, Dr. Margaret, did a wonderful job. My challenge did not stop there...it continued. We now have to make sure she's well for her second plastic surgery.

Sarah's second surgery was at the tender age of 9 months. Not quite a year old yet, already she went through 2 plastic surgeries. The 2nd surgery was to repair her soft palate. Compared to the 1st surgery, the 2nd surgery was a major one. The surgeon had to suture her soft palate so that it will be closed. The palate surgery is very important for feeding and speech development. The lip surgery also has the same importance as well as to beautify her. When she came out of the surgery, there was more blood compared to the previous one. She also had to be monitored at the hospital for 48 hours after the surgery. Once she's feeding well, then we were allowed to go home. This time round she had splints on her arms to prevent her from putting her fingers in her mouth and pick on the stitches. Feeding cleft children before and after surgeries is always a major challenge. I took 2 months half-pay leave to take care of her after the surgery. But it was all worth it to see her happy and healthy.

Between the age of 9 months and 3 years, Sarah didn't have to go for any surgery, but we always have follow-up appoinments ...  ENT, Speech Therapy, Audiologist, Dental, Plastic .... and this will go on until she's 18 years of age. During one of her follow-up appointments with a plastic surgeon, it was discovered that her uvula (the small tiny thing hanging in our throat) was not well formed and this could affect her speech. So the surgeon suggested that she goes for a uvula repair. Another surgery...!

Waiting for surgery...

So, Sarah went for her 3rd plastic surgery at the age of 3 years and 2 months old. This was to repair her uvula. Everytime Sarah goes for surgery...it's always a traumatic experience...not just for her but for ME too. I can't really explain how I feel whenever Sarah is in the OT... lots of mix feelings...scared, worried, tired...only GOD knows how I feel.

Tomorrow, Sarah is going for her 4th surgery. This time it is under ENT (ear, nose & throat). Few months ago it was found that Sarah experienced some hearing loss. Several audio tests were done and discovered that there are some liquid in her ears...due to flu, fever, cold that she experienced in the past. Where the liquid/water comes from is actually from our internal system. Our body is made up of 70-80% water/liquid ... water & blood. The liquid in Sarah's ear could not dry up or come out from her ears, therefore presenting a barrier for sound to reach her cochlea/ear drums...thus resulting in hearing loss. If left untreated, there's a possibility of infection and Sarah can lose her hearing. So, that's why though tomorrow's surgery is minor and normal for cleft children to experience neverthless it's a very important one. The surgeon is going to insert a small device called Grommet in both her ears so that the water/liquid in her middle ear can flow out and allow sounds to flow through. 

I pray to Allah that everything goes well tomorrow. I never lose faith in Him and He has never let me down.

Umi & Sarah

Cheers,

Fazz