Michelle

Mother of Jack Damian Wilbee

October 4th, 2010 – March 3rd, 2011

Abbotsford, British Columbia

Canada

My child died suffering, after two months of pain in the ICU.  His name was Jack Damian Wilbee.  He died March 3 2011 just 20 min before he turned five months.

He was born with Down syndrome and he was perfect and beautiful with the best smile in the world.  He was our only child and we were so happy to have him. We were told he had holes in his heart, a defect common with downs children they said no problem we can fix it, he would be in hospital for 2 weeks after and then we could take him home.  So on January 4th he went to the hospital at 3 months old to have open heart surgery. Everything went wrong after that, he had every complication there was– arrhythmia, his kidneys stopped working from being on life support during the surgery, he survived two infections and a perforated bowel which they fixed by giving him a stoma his bowel was hoisted to his stomach and placed outside of his body where he pooped in a bag.

Then in February they told us he was on the road to recovery -go home they said, sleep for a night do your banking. We did. The next morning he had a heart attack– they don’t know why. We came in as they were trying to resuscitate him.  After 40 min the doc made a decision out of pure emotion– we don’t blame him for that. He put Jack on life support for five days. It worked Jack came back and was taken off support but with massive brain damage, and also Cerebral palsy.  He was awake and could feel but would not progress beyond this point, he could not see except bright colors and no one knew if he could hear but we were thankful just the same.  Our son was still alive, we could still take him home. A week later they took the intubation breathing tube out and underneath all the tape on his face they realized he had a severe allergic reaction. The skin had burned through leaving almost no cheek left it was a huge gaping hole to the bone, he then got an infection in the wound.

He had holes and tubes throughout his body for his bowels, for his dialysis and for his medication and there was nothing left of his cheek. A few days after that they told us his kidneys would never regain function after being resuscitated and his bowels weren’t working right. His heart was also failing again. They told us he was no longer a candidate for dialysis, he had too many complications, he was dying and even when on pain meds his pain was becoming worse.

On March 3rd in the morning, we took him to a child palliative care home, we could not take him home it was too far and his pain could not be properly managed there. He died in my arms 20 minutes before he would have turned five months at 11 40 pm… It was long; he went blue a lot then would start breathing again but very badly. They said he felt no pain and they gave him a lot of pain meds but I don’t know for sure what he felt and even though he was in my arms I don’t think he was aware of it. He kept trying to breathe until finally he stopped. All this happy child knew was that his mom had given him to strangers who did bad painful things to him, he was 3 months old at the time he went into the hospital and that’s all he would ever know.

I see his pain and suffering in my head everyday like a horror show. He was my only child and I have no more purpose in my life, I cannot even bare to look at people or leave the home. My husband and I can’t even think of the future when we are just trying to make it through each day, there is nothing left but emptiness and memories of my little misters suffering and his hard struggle to survive. The will to keep going everyday is draining, my heart is broken but still keeps beating. I see only what happened over and over in my mind. I see him looking at me wondering why I took him from his home, why I gave him to strangers and why are they hurting me- until he died. That’s all that goes through my mind every day.

Michelle blogs at http://myonlybabydiedmar32011.blogspot.com/

You can contact her at mmmfisher2004@hotmail.com

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Comments

  1. Suzanne H says:

    Your son knew you were holding him. Infants can smell their mothers from the next room. If nothing else, he was comforted by you. You didn’t give him to strangers to do hurtful things to him; you did what you thougth was best with the limited information you had. You are not to blame. You loved your son and he you.

  2. k says:

    You poor mama. I am so brokenhearted for you. I looked at your blog and couldn’t help but smile back at the sweet faced little boy with the cheeky grin and chubby cheeks. He knew you loved him.

  3. Shelby says:

    Michelle, I’m so sorry your family has experienced this tragic loss! I can’t know how horrific it was to see your son in such distress, but I too have lost a child. Our daughter also had Downs along with a congenital heart defect, but due to HELLP Syndrome she had to be born extremely prematurely and only lived in our arms for an hour and 47 minutes. While I wish I had longer with our baby girl part of me is thankful she didn’t have to endure these additional challenges because I know my heart wouldn’t be able to take seeing her this way. I’m sure your baby boy remembers being safely inside of you and in your loving arms and none of the bad times that came his way. Wishing you and your husband much peace and comfort as you learn to navigate this new path of grieving parents!

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