Meet Daithi-Vongsa: Daithi was born on July 20th and his introduction to the world has not been the smoothest of transitions. As a brother to four older sisters, we knew his life would be difficult but did not know how true those words would be. Daithi was diagnosed with Dilated Cardiomyopathy and was induced at 35 weeks. While being treated for his heart issues he developed Necrotizing Enterocolitis. Diagnosis: Neonatal Dilated Cardiomyopathy - A rare heart disease where his left ventricle became enlarged resulting in his heart's inability to squeeze efficiently and reducing the amount of blood pumped through his body. Necrotizing Enterocolitis (NEC) - An intestinal disease that results in the death of intestinal tissue and can result in the perforation of his intestines. This results in bacteria leaking into his blood causing acidosis and can lead to severe abdominal infection. Our story: Daithi's mother, Amanda was initially diagnosed with gestational diabetes only a few weeks before her doctor noticed that there was a possible complication with Daithi's heart. On 14 July 2024, his mother and I were at an appointment with a kid's cardiology specialist when we received a phone call that left us shaken. While in the middle of our appointment with the cardiologist, we were notified by Amanda's doctor that there was a severe issue and needed to travel to Children's Mercy Hospital as soon as possible. With very little information other than we needed to get to Kansas City as soon as possible, we rushed home to pack. While driving home, we were hit with another call that simply proves that tragedy loves company. Amanda's father was just diagnosed with Frontal Lobe Dementia. With both calls weighing heavy on us, we began reaching out to find someone to watch our four girls. Both Amanda's mother, who was dealing with the trials of her husband's diagnosis, and my father who luckily was in town agreed to care for the girls. We spent about 30 minutes franticly packing and trying to organize things before our 3 1/2-hour drive to Kansas City. We spent the weekend in the hospital while given little information as to why we were there, other than that there was an issue with Daithi's heart. On the 17th we were finally given a diagnosis of Dilated Cardiomyopathy and how severe the condition was. We were informed that they were going to keep an eye on his and Amanda's condition for the next week or so and wanted to wait until he was full-term. With the knowledge that they were waiting, I returned home on the 18th so that I could take care of the girls, Amanda's Mother could take care of her husband and his medical needs, and I could better pack for the long stay we were expecting. However, on the 20th, things took a turn for the worst and the doctors decided they would go ahead and induce Amanda. Thankfully, I had just started packing a bag in case I needed to return early. Once again I rushed off with the hopes of being able to arrive to be there for Amanda and hopefully the birth. After being born, Daithi was tachycardic (a very high heart rate) and had a rapid respiratory rate. He was rushed off for treatment where they had to incubate him and run multiple IVs through his stomach and later into his arteries. He was later transferred into the cardiology ward where they were better equipped to help him. After a week of staying in the hospital, I had to return home once more while Amanda stayed in Kansas City. Earlier this week, I was able to travel back to Kansas City and the girls were able to meet their brother in person. Although he was extubated, he still requires assistance breathing. This allowed us to hold him for the first time since his birth. Unfortunately, I have had to leave without Amanda and Daithi once more to take care of things back home. Financial Strain: The multiple trips back and forth left our vehicles needing maintenance and the AC in our van died. With the high heat that we have been facing, this was something that couldn't be ignored. The financial strains continue to grow as our savings are depleted. The required repairs to the vehicles, the cost of traveling to KC and back, food, bills, etc. have unfortunately left us drained both emotionally and financially drained. Aid: Although Daithi has shown improvement, we do not know when he will be able to come home. Unfortunately, I fear that we still have a long road ahead of us. After he is able to come home, there will still be a need for many medical appointments and medication. We have already been informed that he may need to be on medication for the rest of his life and the possibility that he may need a heart transplant. All donations will go to assisting our family with relieving some of the financial pressures we are dealing with such as travel expenses, food, and the many expenses we face ahead. Any donations that happen to surpass our goal will go towards aiding Amanda's Mother and paying off some of the debt we have already incurred under these dire circumstances. Final Words: Both Amanda and I would like to thank you and all those who have aided us. Every little bit helps and we understand that life is rarely fair and easy. If you are unable to donate, we understand and simply ask for your prayers for both Daithi and Amanda's father.
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