Our Heart Journey
ABOUT VSD
Our daughter was born with VSD (Ventricular Septal Defect), a hole in the heart, a common heart defect that's present at birth (congenital). The hole occurs in the wall (septum) that separates the heart's lower chambers (ventricles) and allows blood to pass from the left (oxygen-rich) to the right side (oxygen-poor) of the heart. This means that oxygen-rich blood can mix with oxygen-poor blood. As a result, some oxygen-rich blood is pumped to the lungs instead of being distributed to the body.
If the ventricular septal defect is small, the increased blood flow into the lungs will not significantly affect the child. If it is larger and allows much more blood than normal to flow to the lungs, serious problems may arise, including:
* Fatigue of the heart, because it has to work harder to deal with the inefficient circulation of blood.
* Congestion of the lungs, leading to difficulty in breathing.
* Poor weight gain because of an inability to tolerate the exertion needed to feed properly.
* Decreased oxygen to the body if excessive damage has occurred to the lungs, causing difficulty in getting blood to pass through the lungs. In this case, the flow across the VSD may actually reverse, causing blue blood to go directly to the body (this is called Eisenmenger Syndrome).
OUR HEART JOURNEY
THE DIAGNOSIS
For us, it wasn't detected in utero or immediately after birth. It was discovered when she was hospitalized at 10 days old for jaundice. During the pediatrician's routine rounds, I happened to be present. While listening to her heartbeat, he mentioned hearing a murmur that hadn't been there before.
I had heard the term 'heart murmur' during my time in the healthcare field, but I wasn't rentirely sure what it meant. The pediatrician explained that heart murmurs are sounds like whooshing or swishing. Instead of the normal 'lub-dup' sound made by the heart valves closing, the heartbeat produces a 'lub-dup-whoosh' sound, indicating blood passing from the left to the right side through a hole.
The reason the murmur wasn't detected right after birth is that the pressure in the lungs is usually high, preventing significant blood flow from left to right. A hole in the heart could be one of the many reasons for a heart murmur. There could be other reasons as well, although I can't recall them, as the doctor did mention.
The pediatrician was fairly certain it was a hole in the heart but didn't want to make a definitive diagnosis until an ultrasound could be performed. The ultrasound, which needed to be done by a cardiologist, was scheduled for the next day. In the meantime, her pediatrician explained that a hole in the heart is one of the most common congenital heart diseases, accounting for 20-30% of cases. He also described how the heart functions, the potential need for surgery, and other relevant details.
During that brief 20-30 minute consultation, we tried to process the news. It was emotionally challenging, especially since we were less than 2 weeks into parenthood and she still hadn't recovered from jaundice. Naturally, when we got home, I googled everything I could to understand what VSD was, but I still hoped it wasn't true.
The next day, we went to the hospital to meet her cardiologist, who confirmed that she had a small to medium VSD (3-5mm). Typically, a small VSD (less than 3mm) will close over time, possibly within 2-3 years. A medium VSD (3-6mm) might close on its own or might not. For a large VSD (greater than 6mm), surgery is usually required to close the hole.
Receiving confirmation from her cardiologist was tough, but he made every effort to reassure us. He explained that VSD is the most common congenital heart defect and can be easily corrected with a simple surgery, much like patching a punctured tire, unlike more complex congenital heart diseases. We discussed hospitals that could perform the surgery, the various surgical options, and the associated costs. Honestly, finances and insurance were among the first things on my mind, but we realized we just had to take it one day at a time.
Since it was still early in the diagnosis, we were sent home and scheduled for a follow-up in 4 weeks. The next 2-3 months are critical as lung pressure decreases and more blood flows from left to right. In the meantime, we were instructed to monitor her feeding and breathing and to watch for any signs of respiratory distress or recession.
THE FOLLOW UP
After 4 weeks (when she was about 6 weeks old), we went for her first follow-up. Her cardiologist did a heart ultrasound and chest X-ray. Her left heart was slightly swollen and her lungs were congested, which are symptoms of heart failure. It wasn't that her heart was failing to function, but more that it was fatigued. She was prescribed diuretics, anti-congestive heart failure medications that help reduce blood volume by increasing urine output, thereby reducing the burden on the heart.
Her weight gain was very poor, and her pediatrician recommended supplementing breastfeeding with high-calorie formula for premature babies once a day. We agreed with this approach as long as it helped her gain more weight.
THE DAY TO DAY
We didn't treat her any differently, except that when she was younger, we were careful not to let her cry for too long. She is just as active, if not more active, than other babies—almost nonstop.
Medicine
She had to take the medicine twice a day. As she grew, it became more difficult because the dosage increased with her weight, and she developed various behaviors to avoid taking it - banyak-banyak pattern. We tried different tricks, but she would either spit it out, refuse to swallow, gargle it, or sometimes just refuse to open her mouth. She could even cry with her mouth closed.
Weight Gain
She only took the premature formula for a month because she refused to take it after that. We tried different brands and attempted to trick her into drinking the premature formula milk, but she consistently refused. Since she was gaining weight slightly better, the pediatrician advised us to continue with breastmilk.
When she started on solids, we incorporated plenty of butter, avocado, and a high-protein diet. However, her weight gain became stagnant or increased very minimally from 5 to 9 months of age. We then opted for human milk fortifier (HMF), which is significantly more expensive than formula, and also supplemented with MCT oil, both were added into the breastmilk. Her weight gain began to improve slightly.
Hospital Visits
We have follow-up visits approximately every 4-6 weeks. If her condition stabilizes, her cardiologist extends the interval to 6 weeks; otherwise, we return to 4-week intervals. Some of her medications need to be compounded by the pharmacy and collected every 2-4 weeks.
Our goal is to manage her heart failure symptoms, monitor her weight gain to ensure she is progressing well, and postpone surgery for as long as possible if necessary, as younger babies face higher surgical risks.
THE PROGRESS
Around the age of 9 months, her cardiologist determined she was ready to discontinue medication, which we did. He also referred us to a cardiac surgeon to assess whether she might require surgery, especially since her weight gain had been poor in previous months, despite improvements with the addition of HMF and MCT oil supplements.
We went to see the cardiac surgeon when she was 1 year old. As she grew older, she experienced more anxiety during ultrasounds, making it sometimes hard to get an accurate scan. Because of this, she is now required to be sedated, and I was kind of nervous too.
The hole didn't get smaller after a year, but her weight has improved since taking HMF and MCT oil and stopping her meds. We were scheduled for a follow-up with our regular cardiologist 3 months later, and another follow-up with her surgeon 3 months after that.
During our last check-up with her surgeon, the hole didn't grow smaller per se, but there are two flaps of tissue growing and narrowing the blood flow outlet to about 3 mm. We are hoping these flaps will continue to grow and eventually meet, stopping the blood flow from left to right. The surgeon is happy with her weight gain, so the next follow-up is scheduled for 6 months from now, while we continue to ensure she is gaining weight.
THE TREATMENT / PROCEDURE
If she continues to maintain her weight gain and does not show any symptoms of heart failure, she will not need surgery for now. However, she might still need surgery later in life if the hole doesn't close to prevent complications such as damage to her heart valves.
If she needs to close the hole now, she would require open-heart surgery due to the location of her VSD.
There's another procedure called catheterization that doesn't require opening the chest. Instead, the doctor inserts a thin tube (catheter) into a blood vessel. The doctor then uses a specially sized mesh device to close the hole. Only certain types of VSDs may be closed with this method. For our daughter, this option is available when she weighs above 20 kg.
So we are still hoping that the hole will close spontaneously.
First shared on @heartiecutiepie.shop Instagram stories on 14 Feb 2021.