Tony's Story - Congenital Diaphragmatic Hernia (CDH) and Craniosynostosis

I will never forget that ultrasound when I was 26 weeks pregnant with our Jun. We have never heard of Congenital Diaphragmatic Hernia before and we were told NOT to Google it. Of course my husband and I did. And in that moment our lives changed forever. We didn't know what to expect and we didn't have anyone to talk to, and that was the scariest part.

 Our CDH warrior Tony Jr. was born on August 21st, 2013 and unlike normal births, I was preparing for the possibility that my son would not make it. As soon as it was time for him to be born, a team of doctors, nurses and surgeons flooded the room and were ready to do whatever they could to keep him alive. It was a day I will never forget and I wish I knew each and every one of their names so I can thank them to this day. He came out not breathing and needed to be transported quickly to the NICU. Those next couple of months were a cloudy and emotional blur (crying as I am writing this because having to relive those days are heart-wrenching). He needed 2 repair surgeries (he was born with LCDH) and was discharged about a month after his second surgery.

 After bringing him home, we honestly thought the worst was over. We found out at his 4 month check up that was also born with Craniosynostosis and would need a complete CVR (Cranial Vault Remodel skull surgery) at 6 months old to fix it..

 On top of his CDH and his Craniosynostosis, I can't tell you how many times we have been to the hospital for other things as well; inguinal hernia repair, RSV, pneumonia, ear tubes, and the list goes on. He also has been diagnosed on the Autism Spectrum and is currently seeking amazing therapies at school.

I always imagined my first baby to be born healthy, with no complications, and to be wheeled out of the hospital in a wheelchair like all the other normal babies' moms. But my son has become my hero and he has been the biggest blessing. He has taught me about patience, giving and love. I couldn't imagine life any other way! Do I wish that he was born healthy? Absolutely. But he rocks his scars and he is by far the most strong, resilient and brave person I have ever met. He has beaten all of the odds and he is now 6 1/2 years old and loving school, his family and life! May God Bless all CDH survivors, angels and their families