Sunday, December 30, 2018

Baby Ibrahim

Baby Ibrahim. He was one of the reasons why I am writing these series of articles on my journey with Patrick.

I cannot remember when I met him.

I was in the pantry with Patrick when a lady approached me to have a small friendly conversation. She noticed my son's jaundiced skin. She inquired. With a sudden sparkle in her eyes, she asked me whether I could talk to one lady from Indonesia.

She said that her sister-in-law stayed in a two bedded ward. On the next bed was an Indonesian lady with her baby boy. She understood that the lady's baby boy has a liver disease. He might be having the same condition as my son.

This lady stared at my face for a short while. She asked me whether I could visit that mother to give her some advice? That the Indonesian mother appeared so lost and confused. Nightly, she heard her crying. She also heard that the doctor strongly advised her to get her baby a liver transplant.

I felt troubled by her sharing. So, I agreed to meet this Indonesian lady later that night. 

My husband took care of Patrick while i searched for the room ward number. As I entered, I recognised the lady whom approached me in the pantry. She pointed to the curtain drawn between the beds.

Slowly I approached the next bed behind the curtains.

A sad looking mother on the baby cot with her baby next to her. She was busy texting her mobile and requested me to wait.

As I waited, I noticed her baby's name stated on the wall's board - Ibrahim. 5.8kg. I believed he was 8 or 9 months old. Almost a month older than Patrick.

The Indonesian mother finished with her mobile phone, looked up to me. I shared with her of Patrick. Her eyes suddenly have a  reaction. I do not know how to interpret what it meant.

"It's the same. My son have biliary atresia too."

She introduced herself as Mummy Tia, from Medan, Indonesia.

We had some sharing. I inquired whether she knew of anyone else who have this condition. No one. None of her family members knew what it was. She only discovered of her son's liver disease much later when her son was around seven months old. By the time she took her son to see the doctor, KASAI option cannot be done. She tried to seek medical advice in her country. Somehow she was recommended to come to this hospital.

While we were having this conversation, her baby suddenly cried. It was not the usual loud lung cry that you get to hear from babies. It sounded more like whimpering. Immediately Mummy Tia got into action. She coaxed her baby to take her nipple as comfort.

He appeared to have no strength to do even that. And even when he managed to, he would suckle and opened his mouth and whimpered. Then continue to suckle. No matter how Ibrahim may suckle for comfort, pain never left him. His stomach looked bloated, a sign of ascites, fluids in the stomach. Ibrahim's eyes looked lifeless. Unlike Patrick's eyes whom many described as looking alert, bright and sparkly.

I noticed the big urine stain on the bed. I suggested to Mummy Tia to get the nurse to change the bedsheets. She told me no need as she continued her best to comfort her baby.

This scene struck me hard. Nothing matters more than her son's comfort.

This reminded me of Mummy Tia's eyes for Ibrahim
By then my husband came with Patrick in the room. I introduced my husband and Patrick to Mummy Tia.

Before we parted, I kept encouraging her not to give up hope. To keep persevering. To keep on fighting with strength and courage for her son, Ibrahim.

I wanted her to join the WhatsApp support group, but the conversations were in English and Mummy Tia's English is not good. Instead, I gave her the Facebook page of BAMA (Biliary Atresia Malaysia Association), where she can check information on BA. 

Through the support group, an Indonesian mother Facebook contact was given to Mummy Tia. She even asked for my Facebook contact. All these details, I wrote down onto a piece of paper and put it on her table.

Then we left the room. 

I bumped into her again when I need to measure the weight of my baby's used diaper. We have a daily chart which we needed to measure the urine and poo of the baby. This is done to monitor whether the babies having a healthy bowel movement.

Recognising me, Mummy Tia smiled.

"Kita berjuang untuk anak kita."

Which translated to "We fight for our children."

I nodded and gave her the universal symbol of "let's fight on!"

We fight for our babies' wellbeing!
For the first time, I see her eyes have a flicker of Hope although they still looked sad.

Mummy Tia left with Ibrahim the next day. She was supposed to stay a few more days at the hospital. Suddenly she wanted to be discharged sooner.

Until today (28 Dec 2018), I have not heard any news of her since middle of the year. On occasion, I wondered whether I should have just added her in Facebook in that instance instead of waiting for her to add me. Paper can be misplaced. Maybe we should have exchanged our mobile numbers. She did leave in a hurry. I hope she would get the necessary assistance and support for Ibrahim.

If through some miracle that she reads this article (with someone translates to her in the Indonesian language....Mummy Tia, this is Cordy. A Chinese fair looking woman, with black mid-level hair length. Wearing spectacles. Petite at 5 feet. No matter the outcome for your baby Ibrahim, I want you to know that you have done your best as a mother. I am not just saying it. I mean it. Please don't blame yourself. You are a good mother, who tried her very best despite walking into unchartered territories of Biliary Atresia ( BA). You are not to be blamed at all. You are the Light for Ibrahim especially when he needed you the most. May God bless you and especially heal your heart on your journey with Ibrahim.

Mummy Tia, the love and light in Ibrahim's heart



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