I lost my little girl to RSV

When I was 6 months pregnant with my son, I lost my little girl to RSV less than a month before her 3rd birthday. This was a nearly a year ago. Kameha was not a premie (8lbs 15 ozs). About a month before she became very sick she developed pneumonia. I kept her home and we thought everything was better. A month later we went together, mother and daughter, to a Valentine's Day party and it is there that I realized that other mother's do not keep their children home even when they are sick. Kameha and I both developed RSV about 24 hours later and less than a week later she was admitted to the PICU and things got worse. We lost her a month later. First, her lung collapsed when the physician was trying to insert an IV and he punctured her lung. Then her lungs blew out and we had to put her on life support (ECMO). Then she was bleeding internally (her fully blood volume in a day) and they had to operate on her chest cavity to stop the bleeding. She went into renal failure. All along we prayed that her lungs would show signs of clearing so we could safely get her off ECMO. In the end, she could not overcome the last battle - the ECMO machine had a line break and her heart stopped. We, of course, were and still are heart broken. My son went full term and he is healthy and beautiful. I wish he could meet his sister. The reason that I am posting this is to say that even little kids can be devastated by RSV and complications with RSV. Kameha is in our hearts. We don't know why she couldn't fight this battle but pray that more research and education is done on RSV.

13 Replies

  • I am so sorry to hear about the loss of Madyson. Sending you many hugs. I hope that you can find some support and comfort soon. Some find starting a blog, writing a short story, going to support groups, seeking individual therapy or a combination of the above helpful. I cannot imagine your pain but I found it helpful to be here and to get outside therapy. I needed a person not in the situation to listen to me and it really helped.

    We hope to see you around often.
  • In reply to Ladybugmmg22:

    I'm so sorry for the loss of your sweet Madyson. We are here for you any time you need to talk. Keeping you close in my thoughts and sending many hugs your way.
  • I myself has also lost a little girl the same way you have. I know its hard and I'm still not better from the lose of my little girl. Im still lost and need help. I hope this are well. I'm so sorry for your lose :frown:
  • Thinking of you
    You are in my thoughts and prays. I never knew that RSV could take a older child. I always thought RSV affected preemies. I am sorry for the lose of your little girl,my heart goes out to you.
  • I wanted to say I am very sorry for your loss, my son was just in the hospital for RSV and I wanted to inform myself a little bit more on this virus when I came across you story. Thank you for having the stregth to post your story.
  • I wanted to cry while reading your story. Nothing can describe the pain you feel after losing a child. I lost one of my twins shortly after birth and I am still searching for ways to cope with the pain and sorrow. The only thing that gets me through is knowing that he is happy where he is and that someday I will see him again.

    May God give you comfort.
  • Im sorry about your little girl. My son got RSV when he was 3 months old.He was 34 weeks premature.But because he had a cold and I was treating his symptoms and they had given him albuterol for weezing. I believe he did not get it as bad as it could have been. It is scary to think one minute is fine the next its not. I'm glad you had a full term baby boy. I am on my second child also a boy and been confirmed that I have Pre Term Labor again this time Im 22 weeks along. Its not bad enough for medicine but its still tough. My heart goes out to you and your family.
  • My heart truley goes out to you. Your letter was very powerful.

    My son Noah has alot of lung issues and has had RSV as well. He recently was admitted to Childrens for adelectesis, collapsing of part of his lung. I always fear that they may tell me something awful is happenning.

    Take care and thank yu for sharing your story.
  • hi sweetie im so sorry to hear about your loss I dont understand all this myself and I suffer from the worst anxitey possible my anxitey is so bad i have a hard time breathing. I know we dont know each other but we share the pain anyone could possibly indure .Im so sorry :frown: my user name is heyleejade after my little angel if you want to read my story
  • Kameha's Mom
    I just read your story and wanted to say how sorry I am for the loss of you precious baby girl. God bless you and your family.
  • Darcy and Pam
    Thank you for your kind words of support. It's a tough time for our family. Yes, I do want parents to take these diseases seriously. I take our son, Evan, out but am much more vigilant about washing his hands or my hands or using purell, etc. Kameha died on March 19th. I'm not sure what to do to celebrate her life but we will think of something special.

    Again, thank you.
  • For Kameha's Mom
    This is Pam with the education department of the March of Dimes. I am so sorry about Kameha. What a beautiful little girl! I share all of Darcy's feelings for you and your family. Everyone at the March of Dimes sends you our thoughts and prayers.
  • OH Kameha's Mom!

    It was with such heartbreak that I read your story. When I clicked on that picture and saw your smiling, healthy little girl I was just shocked at what RSV could take away! What a beautiful, vibrant little girl!

    I am so sorry that the outcome of Kameha's fight went the way it did. You have such an important message to spread - sick children need to be kept home. Contagious, coughing, pukey children should not go out and expose other children. It is with deep regret that the infected child's mom at the Valentine's party didn't know better.

    I am so happy your son was full-term and healthy. I pray his big sister is watching over him and protecting him. Thank you for coming forward with your story. I only wish it could fall in the right hands.

    Many blessings to you and your family.