Next Generation

For many, having children of their own is dream come true.

Finding out the child of their dreams has abnormalities can leave parents stunned, frightened, lost. 

For our case, we had done the regular pre-marriage screenings, pregnancy screenings, baby screenings. All turned out normal. But when our child started having physical deformities on her chest, we started to worry. Even then, regular doctor and pediatrician felt it was an unfortunate deformity but nothing more.

Thankfully, we met another senior pediatrician who did a detailed family history and suspected something deeper related to connective tissue disorders and requested a workup with University Malaya Hospital.

This led us down the long, winding road of going to multiple departments doing multitude of tests. The feedback showed more organs besides our child's chest deformity was affected, including eyes and spine. Despite us doing our own research, it was difficult to know what to do first, and which items could take less priority. Family relationships were put under great strain, investigating and managing the health of our child was taking up much time and resources. We also questioned God and our faith. 

"Why this happened to our child?"

"Why we have to carry such a burden?"

"Why this happened to our family?"

We figured we needed more authoritative advice. This led us to Professor Dr Thong M.K. a consultant pediatrician with special focus on genetics from University Malaya. Halfway through my child's consultation, Dr Thong turned his attention to myself and started doing a physical exam on me. Then he looked directly into my eyes, and in a very serious tone said, "Please take what I'm about to say very seriously: You have a ticking time bomb." Marfan syndrome's biggest problem is heart complications. I had not investigated my heart for Marfan issues before. 

With Dr Thong's warning, I booked a workup for the heart quickly, and as Dr suspected, I had a serious problem that required surgery to fix. 

While planning next steps for my own surgery, we had a catch up with our family's babysitter. We shared the findings to them and they said, "Thank God for your child, otherwise you would not have found out your dangerous heart problem!"

Then it dawned on us, this is why. Our child, just by being our child, revealed this insight that gave me a chance to fix my heart and save my life. 

I had my surgery. We found a way to manage our physical health somehow. 

We'd like to leave our readers with the following thoughts:

1. Marfan Syndrome is genetically autosomal dominant i.e. 50% chance to pass it on to each child. Choosing to have children is an extremely personal decision to each family, and we respect whatever choice is made.

For our family, we have made a decision not to have any more children to avoid the risk. 

Take note there are fertility services (such as this by Sunway Fertility Centre) that can screen sperm and egg cells for genetic risks and only select suitable ones to fertilize. This comes at monetary cost.

Some families still choose to have children despite the high inheritance factor. 

2. There are ways to manage Marfan problems short and long term. We will collect and share as much info as we can in this site to aid in this.

3. Even if we have Marfan, good can come out of it. Our child's case turned out to have saved my own life. Truly a miracle, no Hollywood / Bollywood / Korean drama could have written such a story line. 

We hope this story blesses you, and allows you to believe in the power and miracle of children as God's gift to families.