Eight days after her first birthday, little Ho Yuan En Jovelynn's infant care teachers found out that her lips had suddenly turned purple and she was very lethargic.
Her worried parents took her to KK Hospital, where she was diagnosed with heart failure.
Sadly, baby Jovelynn passed away on 17 February 2018, on the second day of Chinese New Year. She was only 20 months old.
Her heartbroken father, Jason Ho, shares his grief with theAsianparent. He hopes there were will be more facilities to treat heart failure in babies in Singapore.
"Singapore is so advanced but nothing can be done to save my daughter", says Jason...
Heart failure in babies: Singapore dad shares his grief
You might have read about Jason before. He and his wife had met with an accident while going to visit their critically ill baby in hospital...
Jason works as Sales Executive, and his wife Cindy Lim works as Clinic Assistant. The couple are also parents to Ho Yuan Kai Jovan,10, and Ho Yuan Le Javier, 4.
Jason tells us that family history was the cause of Jovelynn's illness, "I myself am a heart transplant patient. I suffered heart failure when I was 15 years old. My mother is also a heart failure patient."
Doctors at KK Hospital had diagnosed Jovelynn with cardiomyopathy.
The heart disease had impaired the baby girl's growth and development.
Says Jason, "She was learning to walk, jump, crawl and talk, but after she started on medication she had no strength to do all that."
"For the first 6 months, she was on medication but when her doctor resigned from KKH there was a month without a specialist. That was when her condition turned from bad to worse."
"She was in and out of hospital for 8 months. Then later, when her condition worsened, she had to be warded in NUH paediatric ICU for 2 months."
Dealing with the loss of a child...
As parents, we cannot imagine what Jason and his wife would have gone through...
Jason shares, "We can accept that she is no more, but my heart still aches in sadness. Whenever I see her pictures, I still cry."
"My wife also misses her badly...when anyone mentions her name or she sees her pictures or videos she will cry badly..."
"Jovelynn's elder brother, who is 10 years old, understands what happened. He also has this condition (although in a mild form) and is on medication. My younger son does not understand much as he is still quite young."
Jason also talks about his regrets, "We regret that we couldn't do much for her, take her overseas, or even bring her out to see the stars or lights. My little girl loved the lights a lot, and she loved to go out."
"We also regret not taking more family photos with her. We wanted to take 1 last family photo but we couldn't."
There are some valuable life lessons that only death can teach us...
And Jason has this advice for all parents, "Love your children more, they are God's gifts."
"I always wanted a girl. When I first found out that my third child was a girl, I was super happy. But happiness won't last, you never know what will happen tomorrow..."
"So please treasure the time you have with your children."
Heart failure in babies in Singapore
This father remains disappointed that he was unable to save his own daughter, "In Singapore there is no heart transplant program for children."
It is true that Singapore does not have a paediatric heart transplant programme. Malaysia, China, India, Japan and Thailand are among the many countries in the region where paediatric heart transplants have been performed.
According to Associate Professor Quek Swee Chye of NUH, in Singapore, the main barrier to starting a paediatric heart transplant programme is the lack of donor hearts.
Dr. Chye has been quoted as telling Channel NewsAsia earlier, "For kids, there are different ages and sizes from newborns, infants, to toddlers, children, adolescents. You have to have a heart that is of fairly similar size. That's a major difficulty compared to the adult population."
Countries where paediatric heart transplants have been performed usually have a larger population and a bigger donor pool.
Also, children are not covered under Singapore's Human Organ Transplant Act, which allows doctors to recover the kidneys, liver, heart and corneas from the bodies of all Singaporean citizens and permanent residents of sound mind if they die for any reason, unless they opt out.
We hope that Singapore can one day develop a paediatric heart transplant programme, so that babies like Jovelynn have a better chance of survival.
Daddy Jason's words are heart-wrenching, "If I could, I would give up my heart and give to her..." :(
