Gomes, Maliyah Lee

My daughter Maliyah was born with right sided CDH. She had a 10% chance to survive according to the doctors & surgeons. She had one of the most severe cases. She was born July 10, 2013. She went 30 hours without ECMO, then they hooked her up. She was on ECMO for five weeks. She had her surgery. Her stomach filled with blood. so they had to put tubes in it to drain all of that blood. She had a rough time. She suffered from a stroke. She still seems to have no negative effects from it. She kept fighting. She would Desat all of the time. But she never gave up. Eventually she began to ween off of her ventilator. I was finally able to hold her for the very first time after two and a half months. t felt like it had been years. it was only ten seconds. i wanted more. They finally took her off that breathing machine and put nose canulas on her for oxygen. I could finally start to hold her more. eventually, whenever i wanted. after two and a half months she was able to move to another floor. They weined her off of her nose canulas and placed a G tube in her stomach. She had to recover in the NICU for a few days. but then she back on the higher floor. Preparing herself to come home. Right before she was about to come home they got worried that she may have an infection because she got a fever. She proved them wrong. They hooked her up to an IV with fluids for a few days and she was fine. On November 13, 2013 two days before her momma's {me} birthday she was finally able to come home. Four months in Boston Childrens Hospital. So many obstacles, so many achievments. I feel so blessed. The surgeons and doctors call her a miracle. I am so lucky. I still worry that every day could be my last with her. but i also enjoy every moment i have to share with her. I would like to hear from other parents who have gone through this. It helps. It can be really stressful and hard sometimes. Im only 20 and this is my first child. Everything is worth it. i love my daughter. Any advice or words of wisdom are more than welcome. Attachment 1491 Attachment 1492 Attachment 1493 Attachment 1494 Attachment 1495

Hello Michelle! Thanks for sharing Maliyah's journey with us. Sounds like she sure is one tough cookie. So happy that she is home for the holidays and mom's birthday. Best birthday present ever. :) If you need to talk everyone at CHERUBS is very supportive. Let me know if you need anything. Wish you both the best.

Great news! My son is also a R-CDH survivor.

Awesome news I am so glad to hear your beautiful daughter is home!

Welcome Home Maliyah!! So happy she is beat the CDH monster and you were able to bring your sweet girl home with you. Always have hope and cherish your precious child.

Please don't be a stranger on the boards, we would love to hear about Maliyah in the months and years to come and if you ever have questions along this journey, we are here for you.

Hope Maliyah has a healthy winter and keeps thriving at home! (((HUGS)))

Thank you for sharing. Welcome home.

Hi Michelle! So happy Maliyah is doing well. Prayers for a healthy winter.