Our story of Congenital Heart Disease

Congenital Heart Disease affects almost 1% of all babies.

February 7 – February 14th is CHD Awareness week in the States. Congenital Heart Defect, or Disease, is

“A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.” – The Children’s Heart Foundation.

Coincidentally, last month we attended a patient support party at NUH. It was organised by CHAPPS, Congenital Heart Associated Patients and Parents Support group, and was interesting to meet other parents and patients, who are testimony of the doctors and nurses great work.

In 2012, NUH attended to 84 paediatric and neonatal patients. In 2012 there was one patient with a similar condition as Abacus, and if I recall correctly, in the year 2010 he was born, he was the second that year. TAPVC is a rare, but not uncommon condition, but definitely life threatening. He’s only had to have one open heart surgery, and had he not received the appropriate medical attention he most certainly would not have survived past his third day of life.

IMG_0280It is also without a doubt that had he been born decades ago (or maybe just one decade?),  he would not have lived. We also will be eternally grateful that we live here where there is ready access to high standards of medical care. By access I also mean geographically, because if we had had to travel a few hours or even days to receive medical attention, who knows what could have happened.

IMG_0277

Many people ask if it was a traumatic experience for us to go through. It was definitely not what we were expecting, especially since the prenatal scans didn’t pick up anything (it probably would have been difficult to do so anyway), but everything happened so quickly, and after only a short 10 day stay in the PICU he was ready to go home. We also knew that he was in the best care he could possibly have had at that moment, and everything else was really left up to God. In truth, every time I was at the PICU I never felt sorry for myself, or for Abacus. Because just next door, or a few doors away, would be another little baby or kid, fighting something else more complex, more life threatening. When things look bleak, remember to count your blessings!

And now he is going about living a perfectly normal life, and his many scars will make for some good stories to tell when he’s older.

If you would like to hear more from the families with members with CHD, please watch the video below by NUH. I think we were supposed to be in the video too but alas I couldn’t commit to a date because I was due with Scout around then ;)

When there is more awareness about CHD, there can be an increase in early diagnosis, more funding for research, and in turn, more lives saved. NUHS will be trying to get CHAPPS listed as a registered charity, which will help bring more awareness and more support to the patients in need.

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8 thoughts on “Our story of Congenital Heart Disease

  1. I have volunteered in NUH too for young cancer patients. It’s really meaningful to bring smiles to them. And NUH is indeed a hospital with good docs and nurses and high standard of medical care. Thanks for sharing the awareness of CHD. These stories touch me greatly.

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