Thanks for your kindness

  1. I just wanted to "thank you" all for being so kind about my loss.
    I'd like to tell you a little about him.

    My son, Blake was born 6/26/02 and he died 7/8/02. He was born @ 32 wks due to my PIH and a grade 3 placenta. When he was born, we found out that he had a cleft lip and palate. Later, after he had x-rays, we were told he had a spinal deformity where portions of his cervical and thoracic spine were crooked and they hadn't fused normally. That's not all- -the next day we were told that he had a congenital heart defect : a VSD and double-outlet right ventricle. (they then started trying to say in a way that it was tetralogy of Fallot, but they weren't sure)
    He did very well for a 32 weeker-the night he was born he was on O2 and the next morning he was off of it!!! No vent for us (at first)!!! He started eating like a little pig (through his OG tube)-I had to start pumping like a jersey cow!!! He did have the apnea that goes along with preemies, but he was put on theophylline for that.
    At about his 8th day of life, he had to be put back on O2: we had jaundice, so in came bililights-he was on them for 1-2 days. His sats started dropping more each day, so up his O2 went.
    By his 11th day, he was not doing well. We were told that his heart defect had gotten so bad that every time his heart beat it was shutting of blood supply to his lungs-his pulmonary arteries were small to begin with. He was flown to the university hospital where he was on the vent, drips, the works. He coded twice early the next morning. So after much talk with the docs, we decided that if he went downhill again that would be it.
    When he started to decline, we held him and talked to him and then he was taken off of the vent while he was in my arms. He died a few minutes later.
    I decided to post this because #1-I was asked to and #2 I need help.
    We were told that it was possible that Blake had Trisomy 13-his chromosomal analysis came back normal. If there is anyone that can help-we would appreciate it very much. I have been to several sites, but can't find what I want to know!

    Sorry it's long-it helps to "talk"
    Thanks for "listening"
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  2. 20 Comments

  3. by   semstr
    (((((((((((((you, your family and the soul of your son)))))))))))))))

    What devasting news! So very sorry for your lost.
    Hope you can cry and mourn your babyboy Blake among family and friends.

    Now Trisomie 13 is also called the Patau-Syndrom and happens 1/ 5000- 10000 newborns. (may be different in the US)
    Your son had all the symptoms Patau- children can get.
    Prognosis (sadly enough you know this already) is always very bad: 40% of all the newborns die in the first month, in total 70% before they are 6 months old.

    Only once I saw a Patau-child, who was a year old, then she died too.

    How old are you? Have yourself checked, because the risk of getting a Patau-child is higher, when the mother is older.

    Again, I am so very sorry, for your lost.
    Tonight I'll light a candle for Blake.
    Take care, Renee
  4. by   Mkue
    jburnout,
    Thank you for sharing your loss of Blake with us. :angel2:

    Would a support group for parents who have lost children be of help to you also? Did the hospital mention this? Maybe your physician's office could give you some names of agencies to contact.

    You are in my prayers jburnout

    Marie
  5. by   Sleepyeyes
    (((((Our thoughts and prayers are with you and your family in the loss of your son)))))
  6. by   RNinICU
    There are no words that are adequate at a time like this. I am so sorry for your loss.
  7. by   Rustyhammer
    I lost a son also to birth defects and it is indeed difficult.
    I'll be thinking of you.
    -Russell
  8. by   moonchild20002000
    I am so sorry for your loss. Words are just inadequate at a time like this............big hugs coming to you and your family.

    You may want to see a genetic counselor.
  9. by   maire
    Oh I wish I knew what to say...I am so sorry. You and your family are in my prayers.
  10. by   Mattigan
    I'm very sorry . I can't even begin to imagine what it must be like.
  11. by   OBNURSEHEATHER
    I am so sorry for your loss.

    You are such a brave woman for sharing this here with us, and for holding Blake, and cherishing those last moments with him, you are such a wonderful mother.

    Please take care, and know that we are always here to "listen"

    :kiss

    Heather
  12. by   SmilingBluEyes
    (((((((((((((((great big hugs))))))))))))))))))....I am truly sorry for your loss. you can lean on us here ANYtime you need to!
  13. by   WashYaHands
    I am so sorry for you loss.

    Linda
  14. by   eltrip
    ((((((((((?burntout))))))))))

    I am saddened by your loss. I know that there I haven't any words that will comfort you...I've had friends and family who have lost their children at birth. I remember how hard it was for them & for those of us who love them.

    And ditto what SmilingBluEyes said. Lean on us anytime. Together we are strong...

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