NINE-MONTH OLD Shyann Tan (photo above) suffers from congenital disorder of glycosylation (CDG), a rare disease that often causes serious, sometimes fatal, malfunction of several different organ systems in affected infants. For Shyann’s parents, Alan and Angela, every moment with Shyann is precious; it is “one more moment given by God”. Babies suffering from CDG do not usually live past two years.
As a result of the disease, Shyann has a defective heart, an enlarged liver and kidney, loss of motor skills and affected vision.
Shyann is the third child of Angela and Alan Tan. Their eldest daughter Shanise is now eight. Ransel, the second child, lived for only 45 days. It is now suspected that Ransel probably had CDG as well. He died during surgery to close up the hole in his heart.
Mrs Tan, a Catholic who used to be very involved in her parish, said she had “hidden God at the back of my mind” when she entered the workforce. She admitted she had even not wanted Ransel when she was pregnant with him as there were other things she wanted to do then.
Mrs Tan had even considered aborting Ransel when he was diagnosed with having a “complicated heart problem” just five months into her pregnancy.
“But deep down, I had a conviction that I shouldn’t just abort him,” she said. She carried Ransel to term.
Ransel went into surgery to seal up the hole in his heart with the promise of a high percentage of success. The operation was already completed when he unexpectedly started to bleed profusely from the heart.
“I didn’t know the day of the operation was his last day. I was at a loss and nobody could make me feel better,” she recounted. “The pain of a loss of a child to a mother… is unbearable.”
But it was also the pain of losing Ransel that brought her back to God again. “I could only find consolation at church,” she recalled. “And it was then that I heard God ask, ‘What happened to you? You used to come to me.’ He made me ponder more seriously about being a better mother to my daughter, wife to my husband, daughter to my parents.”
Today, she said, “If not for my faith, I don’t think I will be able to accept all of these. I feel close to God. I know the road to Him is filled with suffering and pain, and never easy. Probably He chose me because He thinks I can endure all this.”
The couple prayed for another child and within six months Mrs Tan was pregnant again. Shyann weighed 2.9 kilogrammes at birth.
Five months later, she weighed only three kilogrammes; her parents were alarmed and surprised when she was diagnosed with CDG.
Because of what happened with Ransel, scans of Shyann in his mother’s womb was done but the CDG problem was not detected.
“But I would still have given birth to her no matter what,” Mrs Tan added. “We just needed to be prepared for another baby with a hole in her heart. Life is given by God after all. If God wants to give me a hole in my heart, I have to take it. I can’t just throw my cross away. Whenever bad things happen, I thank God that I can grasp some good.”
Shyann turns one on Mar 2 and is tiny for a baby her age. She has suffered greatly. She is hooked up to life-saving machines; she went through a cardiac procedure to restrict blood from gushing out from the hole in her heart and flooding her lungs; she needs 24 hours monitoring; and she is fed every four hours via a tube that goes into her stomach. A ventilator goes through her nostrils to give her the oxygen she needs. Every slight change in weather or temperature affects the amount of oxygen she requires.
The cost of medical care to maintain Shyann “is an issue but we can always cut down on other things”, Mrs Tan said.
“Her prognosis is, she can never be like a normal child,” she explained.
“Usually, these babies pass on because of complications and malfunctions. They will not enjoy quality life, but I always believe in miracles.
“I don’t want to cast a verdict on her but just to cherish her everyday and thank God for another hour, another day. I know He will take care of us.
“A non-believer probably doesn’t see God’s hand in this experience. I choose to keep quiet and let them see for themselves why I’m able to overcome myself. When people say I’m very strong, I tell them it’s God who bestows courage on me before giving me this.”
Mrs Tan said she had reached the climax of her pain when she lost Ransel, and has been learning as much about CDG as she can. She hopes Shyann can grow a little bigger so the cardiologist can proceed to close the hole in her heart.
Mrs Tan continues to go to church but “it is very tiring for me”, she said. “I don’t get much sleep but I can’t use Shyann as an excuse. God will make sure I can get through that one hour of Mass.”
Despite all the pain, Mrs Tan does not regret giving birth to Shyann.
“Shyann didn’t choose to be born by me. She was handpicked by God and me too, to conceive her. I feel so proud of her that she’s been through so much.”
Shyann’s story was carried by channelnewsasia and The Straits Times but Mrs Tan regrets that the reports missed out on a crucial element – her faith in God.
This faith, which has carried her through so much suffering, and this story, she wants to share with CatholicNews readers. “I hope that someone will read my story and know God will take us through,” she said. “With that in mind, whatever happens, I’ll just take it and walk on.”
By Joyce Gan