We are raising funds to help ease some of the cost of open heart surgery for my 1-month old baby girl due to a Congenital Heart Defect known as Tetralogy of Fallot, a potentially fatal condition that HAS to be corrected by surgery. It's the same condition that affected the son of late-night talk show host Jimmy Kimmel, where many of the raw emotions that he shows in that video do accurately express where I'm at these days.
My wife and I went through a textbook pregnancy, no complications, no abnormalities & no illnesses, where the first trimester Panorama Scan and the Second Trimester Fetal Anomaly scans were normal. We managed to carry the baby to full term before delivery, and were excitedly looking forward to life as first time parents to our daughter. However, those dreams came to a screeching halt on the second day of her life.
- First Scan (21 April)
We were called into the Pediatrician's office and were told that a heart murmur was detected, where the echocardiogram revealed holes in they heart with BOTH an Atrial Septal defect (ASD) AND a Ventricular Septal Defect (VSD). This was an immediate source of worry, although I have heard that heart murmurs in infants are fairly common, and if the hole is small enough, there was a chance that the heart would naturally close the hole without surgery, or that the hole would be small enough as the heart grows to not be a concern.
- Second Scan (26 April)
The second scan performed a week later dashed all hopes of that, since Tetralogy of Fallot was diagnosed, a special case of hole in the heart, complicated by an overriding Aorta (which more or less means that it will never heal by itself) where this condition causes oxygenated and deoxygenated blood to mix, meaning that in order for the body to get enough oxygen, this puts the heart on overdrive, having to pump harder and faster which could lead to congestive heart failure (CHF). My daughter was immediately put on medication to remove extra fluid in the body so that the heart would not have to work as hard.
Didn't help that she had to be re-admitted for phototherapy on the day of the second scan due to infant jaundice, adding another worry for us. Thankfully, a month on, this is not a concern anymore.
- Follow up appointment (3 May) and Third Scan (10 May)
We had appointments with the pediatrician every week since her birth. No scan was conducted on 3rd May (just a regular follow up on the jaundice), and the next echocardiogram was done on the 10th. We were given even more bad news this time with Patent ductus arteriosus (PDA) diagnosed due to a vessel not closing when it should have. This was detected in the first scan and seemed to have closed by itself in the second, but had unfortunately opened again, resulting in even more complications with regards to the oxygenated and deoxygenated blood mixing.
Needless to say, as parents, we were pretty traumatized at this point in time since we were just getting bad news after EVERY appointment with the pediatrician. At this point in time, we were referred out to a pediatrician cardiologist and a surgeon to potentially look at the timeline for surgical correction.
- Fourth Scan (17 May) & Consultation with Surgeon (18 May)
You can probably guess where this is going by now since the fourth scan revealed more bad news in that the size of the holes in the heart were much larger than previously thought. While initially shown to be around 5mm (moderate size), the new scan revealed that it was closer to 8mm instead which is even more of a concern, and we were immediately booked in to consult with the surgeon the next day.
After consultation and based on my daughter's current condition (trouble feeding and general fussiness, likely due to fatigue from the heart working overtime), we agreed that it would be best to do the surgery ASAP, and it's currently penciled in on Saturday 22 May. This surgeon is very experienced which gives my daughter the best chance of success, and the risks are the standard ones associated with open heart surgery (mortality rate of around 1% according to the surgeon). With the completion of this surgery, our daughter is expected to lead a normal life with no restriction on activities and no further surgeries required down the line for this condition. She will however have a scar for the rest of her life, marking her as our little heart warrior (just like this little guy!).
Fundraising & what's next
As indicated in the estimated charges from the hospital attached above, this procedure is likely to cost us somewhere in between S$110,000 and S$130,000 which is a substantial amount of money to us.
Based on the highlighted portion of the document, on the low end estimate, we will require
- Hospital cost for ICU & general ward - $65,000
- Surgeon fees - $22,000
- Operating theatre assistant - $2,500
- Consumables (material to close up the holes in the heart) - S$315.00
- Anesthetist - $6,500
- Cardiologist - $3,500
Which comes up to $99,815.
We did get pregnancy insurance, but that only covers up to $5,000 since it is a congenital defect, and with the diagnosis, we are unable to get a hospitalization plan, which means that the bulk of the cost will have to be paid out of pocket.
All funds raised will go towards this surgery, with any excess going towards follow up medical costs for medication, consultation, scans and so forth down the line.
Updates will be posted on her condition post surgery and on the road to recovery, where a copy of the final medical bill will be shown upon final billing.
A Personal Appeal
Yes, the timeline of this is accelerated due to the urgency of the case and did come as quite a shock to us as well since everything seemed normal during pregnancy and the ultrasound technician for the pre-natal scans must have missed this condition. We just wanted a healthy kid but got a rude slap in the face by life. We've been through a whirlwind of emotions this past month and are now at our wits end so we're turning to crowdfunding to tide us through this difficult time.
Some of you may know me from my online presence, where I generally try to keep a private persona. Therefore, I'm reluctant to post photos of my baby girl or even reveal a name, and would humbly seek your understanding to respect our family's privacy.