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Thread: Gomes, Maliyah Lee

  1. #1

    Talking 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 1491Attachment 1492Attachment 1493Attachment 1494Attachment 1495

  2. #2
    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.
    Felecia Marie Woodruff- CHERUBS Volunteer
    Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member

    Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
    21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
    Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
    My Facebook page: https://www.facebook.com/felecia.woodruff
    Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

  3. #3
    Great news! My son is also a R-CDH survivor.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  4. #4
    Awesome news I am so glad to hear your beautiful daughter is home!

  5. #5
    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)))
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  6. #6
    Thank you for sharing. Welcome home.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

  7. #7
    Hi Michelle! So happy Maliyah is doing well. Prayers for a healthy winter.
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.

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