On Oct. 7th, I was due to go home with my mom and dad, which we were all very excited about. My mom dressed me in my going-home outfit and put a little blue hat on my head and snapped a bunch of pictures to remember this very important day. Around 2:30pm, Dad packed up the car and we got one last family picture taken by our wonderful nurse, Denise before heading out of the hospital. A very special nurse named Kathy Hill was called from the NICU to walk us down to the car and that is where all the trouble started. Kathy, my dad and mom noticed I was breathing little funny but mom and dad weren't sure what to think of it. Kathy also noticed my skin color was changing a little bit and started mentioning some concern to mom and dad. Dad went to get the car out of the garage, but luckily, Kathy was observant enough to suggest that she, mom and I go back upstairs to check things out.So up we went, bac to the nursery. Mom and dad waited outside and watched from the window as Kathy took my pulse and examined me. Then Dr. Akshaya Vachharajani, a Wash U. Prof. of Pediatrics who was at the hospital that day walked in to check me out as well. Mom and dad started to get very worried as more doctors went in to look at me and they went to sit down and wait to find out what exactly was going on. The pediatrician from the hospital, Dr. Deming, who had checked me out during my stay, then came to talk to my mom and dad and told them some very upsetting news. She explained that it looked like I had some sort of infection or possibly something even more serious was going on and that I was very very sick. Mom and dad were completely stunned because I had seemed perfectly healthy about an hour earlier and they had almost taken me home from the hospital! Me, my mom and dad know that it was divine intervention that brought Kathy into my life and we definitely believe she is my guardian angel. It's also no simple coincidence that Dr. Akshaya was one of the first doctors to look at me and he is another one of my special angels. I can't wait to give Kathy and Akshaya a big hug one day!
So then Denise led mom and dad to a conference room to wait for more news while the doctors took me to the NICU to give me more special care. About an hour later, Dr. Akshaya sat down with my mom and dad and explained what they thought was happening to me. He said that my condition was critical and again, that it may be an infection or that something called a "PDA" - a duct that connects my aorta and pulmonary artery- had closed and possibly cut off the blood circulation to my body, and then the third possibility, and most serious, was that I may have a heart defect called Hypoplastic Left Heart Syndrome (what a smart doctor!).
He explained that they had already started giving me antibiotics in case it was and infection and that the transport team from Children's Hospital was on their way to take me there. He said that they would also administer a medication to reopen my PDA, if that was in fact the problem. Soon after the transport team team arrived and got me ready to got to Children's. Mom and dad got to come in and see me before they took me out and when they saw me they were very scared. My skin was very pale and I had gotten some IV lines put into my belly button for my medicine. They took me downstairs and put me in the ambulance and my mom and dad followed in their car to the hospital. When we got there they rushed me to the NICU and started working to stabilize me and to figure out what was going on. Mom and dad were met by their parents in the waiting room and a while later, they were taken back to talk to the doctors about my condition.
Dr. Jagu Anadkat,one of the fellows and Dr. Silva, Cardiology, explained to them that the "plumbing" of my heart was not set up the same way as a normal heart and that I had congenital heart disease. When my PDA closed when I was getting ready to go home, the blood supply was cut off to my aorta so I was not getting blood circulation to my body. Luckily the medicine opened the duct but I had gone into shock at Mo Bap, so it would take a while to stabilize me. Dr. Silva explained to me, mom and dad that there was going to be a very long road ahead of me which would definitely include multiple heart surgeries to correct my defect.
Jagu then explained that my defect was called Hypoplastic Left Heart Syndrome (just as Dr. Akshaya had suspected) and that instead of 4 chambers, my heart only had 3 because I don't have a left ventricle. She explained that to fix my heart, I would undergo 3 different surgeries - the first as soon as possible, the second around 4-6 months of age and the third and final around 2-4 years of age. She also told us that this type of defect is basically a random act of nature and there was nothing that we did or didn't do that caused this to happen. It occurs very early when a baby is developing - around 6 - 8 weeks, and sometimes it is detected before birth but sometimes it is not. The next day (10/8), mom and dad met with Mary Wood, RN, who explained the surgeries in more detail and told us about the surgeon at Children's named Dr. Huddelston, who was going to perform the sugeries. I was also going to remain in the NICU under the care of Dr. Coghlan, Fellow, Dr. Criscola, Resident, and Dr. Mathur, Attending until a room opened up for me in the Cardiac ICU. I can't believe how lucky I am to be at this hospital with such an amazing team of doctors and nurses looking after me!
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