To all mothers and fathers out there, please read this

Imagine your newborn baby have been diagnosed with some sort of internal abnormality and you are told that your baby will have to go for a surgery and most probably will have to live the rest of her life without one of her organs, what would you do?

This is the reality that my sister is going through with her two months old baby girl, Alina.

Before I go further, I would like to state here that my sister asked me to write her story. Her reason is NOT to gain sympathy nor is she asking for donation of any kind. She wanted her story to be told so that all parents can be aware of this problem and inform your Ob/GYN to do a thorough ultrasound examination during your pregnancy. From about 18 weeks it is often possible to detect abnormalities of the baby’s kidneys or bladder and one baby in 200 is found to have one of these abnormalities.

7th August 2012

It was supposed to be a shopping vacation. Raya is nearing and my sister and me wanted to shop for Raya clothes so we flew to KL, hoping to catch the big sales. But Alina was having some mild diarrhea for the past 2 days and I told my sister to just bring Alina to a clinic. Luckily, she remembered that her husband’s colleague once said that if ever she’s in KL, go to Gleneagles Hospital because they have the best pediatricians in Malaysia.

So off we went, never once thinking of the worst except wanting to treat Alina’s diarrhea.

As soon as we were called, the doctor asked whether Alina has gone through an ultrasound 10 days after birth. We said no. Even Kaisan didn’t go through any ultrasound except when I was pregnant with him. The doctor said that for all his patients, he would do a thorough ultrasound 10 days after the baby is born to check for any abnormalities internally. Apparently the practice is nonexistence in Miri.

The doctor then went and scan Alina’s tummy. After a series of snapshots taken, the doctor asked me to step outside because he wanted to talk to my sister alone. I waited outside with a crying hungry Kaisan and I waited. And waited. And waited.

After an hour of waiting my sister came out, looking pale and shaky. She said, “It’s worst that I thought” and she went and told me what the doctor told her –Alina’s right kidney is seriously damage due to blockage to the flow of urine. Her left kidney is 5.6cm in size (normal) but her right kidney is 11cm swelling big.

My heart went cold and I thought to myself, “Oh God please don’t make her go through a surgery” but surgery is the only way it seems.

8th August 2012

My sister went to Gleneagles again to get a second opinion. This time she met a kidney specialist and again, the result came out the same.

According to the doctor, Alina will have to go through an isotope scans next month. An isotope scan can assess how well the right kidney is working (as the radionuclide chosen is taken up by kidney cells and passes into the urine). So, the scan can detect scars on the kidney, and how well urine drains from the kidney to the bladder.

After that, we will have to wait for Alina to turn 5 months or gain 7kg, whichever comes first for her to go for an operation to either salvage the right kidney or to take it out.

When my sister was first told of this, her first thought was, “Out of 200 babies, one baby is found to have kidney failures. Why is that one baby had to be my baby?”

God works in a mysterious way, as the doctor said and I can’t tell her how sorry I am that her beautiful baby girl has to go through this nightmare. But I comforted her by saying that at least we detected it early and actions are being taken immediately.

Alina will survive and she will strive healthily even with one kidney.

When the doctor asked why didn’t my sister act upon this matter straightaway, we were dumbfounded because we didn’t know Alina have such problem. The doctor said that the kidney problem should be able to be detected during pregnancy, as early as 18 weeks through pregnancy ultrasound.

Then we remembered… when my sister was 9 months pregnant, her Ob/GYN found a black spot in the center of Alina’s kidney where the urine is collected. The doctor said the reason for that was because her baby was not urinating and in few days time, to come and check again. My sister went for second opinion with another Ob/GYN and the doctor said there was no black spot. In another couple of days, my sister went for another checkup with the first Ob/GYN and he said the black spot was still there.

My sister then decided to be operated then and there because she was worried about her baby. Upon delivery, the doctor did not once mentioned about the black spot in Alina’s kidney again and we did not thought of bringing the matter further as we accepted his diagnosis that Alina was just not urinating while in the womb. As soon as she was pulled out, Alina urinated and we cheered, thinking the problem has been solved. Apparently, that was the tip of the iceberg.

9th August

When we went back to Miri, we asked all of our friends and family if their babies ever had an ultrasound 10 days after birth. Not a single person answered yes and this included the pediatricians in Miri.

Due to the negligent of the Ob/GYN, Alina has missed out 2 months plus of medical treatment that if she had taken right after birth, her right kidney might be able to be safe. Unfortunately the kidney is now severely malfunctioning due to late action taken.

Do take note that kidney problems have no signs whatsoever. The only way to detect is by doing an ultrasound.

I have asked Kaisan’s pediatric to refer Kaisan to get an internal scan soon and I am praying everything is well with my son.

This is terrible news for everyone in my family. I cannot imagine what is my sister is going through right now but I am heartbroken, angry, sad and afraid of what the future holds for my niece. My sister and her husband are strong people and they ask nothing except well wishes and prayers for their daughter. My sister also want parents out there to be aware of this matter so you know actions can be taken immediately right after birth.

The truth is, in a situation like this, there is no right or wrong reaction and there are no profound words to be spoken and my sister understands that. Alina is a strong girl and she is a fighter. And so is my sister.

Please share my sister’s story in your social networks, to your friends and family and your co-workers. We hope that the more people know about this, the more people will take actions immediately upon discovery.

Thank you.


Ryonall Arbi said...

Just read this post through my sister's suggestion. I just had my princess born and after reading this, I will surely make a thorough checkup on her just to ensure that she is alright. Nothing shall be overlook.

Thanks for writing this and thanks to your sister for sharing it to you. I hope all goes well for your niece and your sister.

Although like you said that your sister didn't ask for anything (even sympathy) for her stories but I feel sorry for her and her daughter on that. As a parent who cherish their child so much, I share such feelings as I can only see my princesses 4 times a year.

The Other ME said...

My prayers go to your sister and her beautiful daughter..please tell them to remain positive, God is merciful and He will not abandon them.

I have always been a silent reader of your blog, today i just had to thank you for sharing this. U see, while you were pregnant , i was too and so i can relate to much of the things u have mentioned in your previous posts. I now have a baby girl of my own and i will bring her for an ultrasound checkup.

Please be strong dear

Anonymous said...

This is really something. Every parents should definitely do this.
Thank God you and your sister decided to fly to KL to buy raya clothes! At least you went to the best hospital first thing first. Can't bear the thought if that were to happen here in miri. Every parents wants the best for their baby.

Thanks for sharing this story. As for baby Alina, she is a fighter and she will be fine because she has all her amazing families to support her.

Balqiz Sulaiman said...

Thank you guys. We hope many parents will take actions and check their babies thoroughly. This small act can be a major discovery for most.


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