Anthony Maddaloni-Torres is our sweet, beautiful 2-month-old baby boy. Unfortunately, Anthony was diagnosed with CDH. They had to do surgery on him to close his diaphragm. If you do not know what CDH is, I will provide a link underneath. The doctors do not know what causes this; it is just a very random diagnosis that thousands of families suffer from, sadly. We found out at our 20-week check-up. We were told we could terminate up to 26 weeks or take our chances. This is OUR BABY; we have heard his heartbeat and seen him on the sonogram. Fast forward, we took our chances. Like we said, this is our baby! It’s impossible for a parent to ever HAVE to make a decision like that, that FAR along. Before that, he was perfectly healthy. Even his heartbeat at every single appointment was perfect! So, we were literally in shock to find out that he had right-sided CDH, which is more unpredictable than left-sided CDH. It was rough. We had to do our own research and called so many places. The problem was that most of these places that specialize in CDH babies do not take out-of-state insurance, and without it, it is extremely expensive.

On April 26th, at around 10:45, my OBGYN, including the entire team, came in and woke me to tell me that we needed to do a C-section RIGHT NOW, under general anesthesia. We did not even get to see his first moments in this world, but we are just so grateful that he is even here at all because he was given a 10% chance for a survival rate. My fiancé worked an amazing job right from home, making over $20 an hour, then his job laid people off. Now, he just started working a job, but it is minimum wage. We are doing whatever we have to do. We also put over $5000 into our car, just for it to have problems again, which would have cost more than what the car was even worth, so we lost it. Right before that, we had also lost the Nissan because the transmission went. Boston is definitely expensive; even the food there is ridiculously priced. But, anyway, we thank God Boston’s Children’s Hospital came along. They are absolutely amazing there; we could not ask for him to have better care. However, we live in New York. Boston is 3 1/2 hours away. A couple of times, with heavy traffic, construction, plus stopping ONLY once for food, it took 5 hours to get there. Right now, after two months of being in the NICU, Anth was moved to the regular inpatient floor. This is the longest we have ever had to go without seeing him. It’s not cheap, and unfortunately, it is hard for us to ask, but we need help. Times are really tough right now. We went from being at least okay and on our feet to having to worry all the time about SO MANY things, but obviously, most importantly - Anthony. Living in New York and the fact that he is all the way in Boston until he is ready to come home, it has definitely been hard. Plus, the trips there and everything else is not cheap. Now that he is off of the NICU floor and on the inpatient floor, the hospital needs us to be there more so that we can start taking over what his nurses have been doing. If we are not able to do that, then that could delay how soon he is able to come home!

Eventually, even just by looking at him, you will never know that he was diagnosed with CDH. However, that is a long way down the road. We still have a lot of work to do, plus more to learn.

It is very hard and very costly for us to get back and forth from New York to Boston so frequently. We would appreciate greatly whatever anybody could do to help out financially. If you have read this far, thank you so much, and we appreciate any help and support!

Please watch this; we had no idea what CDH was until Anth. We believe that more people should be aware of what this random diagnosis is.

“What is CDH?”

https://youtu.be/wtIUVepc2l0?si=fP94D6KZe6SGdjYl