My little sister, her name is Grace.
It is the same meaning as my name, Ern.
On 9th of Sept we found out from the 18 weeks ultrasound that Grace 's brain was not growing properly, the medical term of the defect was alobar holorprosencephaly, it was a failure of separation of the brain into two halves and is a very serious malformation. And an amniocentesis test was done on that day which showed that there were extra copy of chromosome 13 in every cell of Grace, sometimes babies with trisomy 13 have also some normal cells, but Grace has no normal cell at all. The doctor was telling us that it was so rare for this kind of baby to be able to survive until after the first trimester, but Grace did!
It was such a horrified shock for mom and dad on that particular day. They did not know what to do and they rang Andy. Neil and Andy came to our house and had a chat with mom and dad. Mom's emotion was very unstable and she told them that she decided to go for termination. Babies with trisomy 13 have very slim chances of being survive and normally have alot of suffering in terms of the malfunction of the organs, they might not be able to breath, and not able to swallow things. Mom saw how grandma suffered for 3 days before she died of lung cancer, she was not able to breath and it was like the fish got out from the water. The doctor told mom that some of the babies might suffer pain. She asked the doctor about the process of the termination, and about how to minimise the suffering of my poor Grace. She wanted to be a mom that was able to protect her child and provide her the best condition. She still thought that she could control everything!
But she was wrong. She could not release herself while carrying such a huge burden on her shoulder, the fact that Grace was dying and being a mom she could not do anything to change the situation made her realised that God is the only one that could help her! She poured out everything to Him and let Him take the control, she prayed with all her heart and soul to ask Him for help.
We were praying that Grace could be able to survive but we was also praying that she could leave without too much of the suffering. If she was able to make it to full term and born alive, being her parent, at the first glance of her, mom and dad already need to decide whether to aggresively save her or just let her go, by aggresively saving her, she would be ended up having alot of suffering and yet still die in the end; but letting her go means we might choose not to feed her at all. It just drives us crazy!! How could any parent on the earth able to make such a decision??
Step by step, mom understood alot that she needed God's help. She left every decision to Him because He is also the father of Grace, He is the one that created her and He is the best person to understand what is best for her! The love that He has for us, is the foundation that sustain us through this difficult situation.
Till now, Grace is still actively and happily kicking in mom's womb, she is a strong little girl and she will be stronger than her mom that she will be able to go through any difficult situation. Most importantly, God is with her, and God will provide to her what she needs. Mom had another ultrasound on 5 Nov, the doctor arranged a 3D scan for us to see Grace's face. She thought it would be better if we prepared ourselves before we see her actual face. Baby with trimosy 13 would have facial abnormality. In the scan, we saw Grace's chubby face. She was so cute and she kept rubbing her eyes. Our love for her became so real that we hope we could carry her straightaway in our arms!
There is a bible passage quoted,
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
--Psalms 139
It was such a horrified shock for mom and dad on that particular day. They did not know what to do and they rang Andy. Neil and Andy came to our house and had a chat with mom and dad. Mom's emotion was very unstable and she told them that she decided to go for termination. Babies with trisomy 13 have very slim chances of being survive and normally have alot of suffering in terms of the malfunction of the organs, they might not be able to breath, and not able to swallow things. Mom saw how grandma suffered for 3 days before she died of lung cancer, she was not able to breath and it was like the fish got out from the water. The doctor told mom that some of the babies might suffer pain. She asked the doctor about the process of the termination, and about how to minimise the suffering of my poor Grace. She wanted to be a mom that was able to protect her child and provide her the best condition. She still thought that she could control everything!
But she was wrong. She could not release herself while carrying such a huge burden on her shoulder, the fact that Grace was dying and being a mom she could not do anything to change the situation made her realised that God is the only one that could help her! She poured out everything to Him and let Him take the control, she prayed with all her heart and soul to ask Him for help.
We were praying that Grace could be able to survive but we was also praying that she could leave without too much of the suffering. If she was able to make it to full term and born alive, being her parent, at the first glance of her, mom and dad already need to decide whether to aggresively save her or just let her go, by aggresively saving her, she would be ended up having alot of suffering and yet still die in the end; but letting her go means we might choose not to feed her at all. It just drives us crazy!! How could any parent on the earth able to make such a decision??
Step by step, mom understood alot that she needed God's help. She left every decision to Him because He is also the father of Grace, He is the one that created her and He is the best person to understand what is best for her! The love that He has for us, is the foundation that sustain us through this difficult situation.
Till now, Grace is still actively and happily kicking in mom's womb, she is a strong little girl and she will be stronger than her mom that she will be able to go through any difficult situation. Most importantly, God is with her, and God will provide to her what she needs. Mom had another ultrasound on 5 Nov, the doctor arranged a 3D scan for us to see Grace's face. She thought it would be better if we prepared ourselves before we see her actual face. Baby with trimosy 13 would have facial abnormality. In the scan, we saw Grace's chubby face. She was so cute and she kept rubbing her eyes. Our love for her became so real that we hope we could carry her straightaway in our arms!
There is a bible passage quoted,
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
--Psalms 139
