Wednesday, April 8, 2009

My Heart Breaks for Baby Kaylee

Last night, one of Joshua's nurses told me she'd seen on the news a very disturbing story of a baby named Kaylee Wallace.

photo courtesy Global TV

This 2 month old baby who lives in Canada was on the news because her parents, Jason Wallace and Crystal Vitelli want to donate Kaylee's heart to another sick child. Watch the news story below:

What is so disturbing to us is that in the story, doctors called baby Kaylee terminal. But in the stories I've read, it was reported that Baby Kaylee just cannot breathe on her own when she sleeps. That is the same problem children with CCHS and even some children with ROHHAD have. Baby Kaylee's medical condition is called Joubert Syndrome.

Joshua's nurse is convinced Baby Kaylee is a viable child who can live a good long life if she is given the chance to be ventilated properly when she sleeps. But she is afraid the parents of this sweet baby girl do not have all the facts they need to make that decision.

I pray that if Kaylee can live a good life just by being on a ventilator when she sleeps - like Josh does right now - that somehow the Lord will intervene and lead her parents to the information they need before it is too late for Kaylee.

Here is a link for more information about Joubert Syndrome.

Here is a link to a website for the CCHS Family Foundation.

What do you think?


pinktoepoish said...

I think that if there was a chance, any chance at all that my baby could live I'd want to find every avenue possible before giving up. I can't imagine how they feel, but I hope as you do that they get some direction.

Haven said...

Thanks for putting this up. I really hope they search deeper and find the help and resources they need.

Vanessa Wooten said...

I had this comment sent to me about my posting about Baby Kaylee and I just had to share it with everyone............

"Sometimes, people feel that is too much for their child to endure. I was given that option with my son Jacob and decided against it because it was only prolonging the inevitable. It would have started out only at night to ventilate him, then it would have been an all the time thing. My son was also 2 1/2 and would not have stayed hooked up to a ventilator unless he was restrained all the time and I could not put him through that. He had been through so much throughout his short life and I could not put him through it. It is possible that the parents do not completely understand, but at the same time, maybe they are just making whatever decision they feel is best for their child. Doctor's would not let them make that decision if it wasn't necessary."

Below is my response:

Oh my goodness. That is horrible! When we went to Orlando for the CCHS Family Conference last summer, we saw several small children on ventilators. They were smiling and happy and even walking around. I can't imagine deciding not to let them live just because they may have to be connected to a ventilator. I don't want to offend you with my remarks. I just want you to understand why I feel like I do. I have seen doctors who haven't a clue about CCHS and disorders that affect breathing. If they don't have a clue, they will not be able to give good advice in regards to this kind of thing. Perhaps the parents aren't ready to deal with vents and all. I know I wasn't when my son suddenly went into respiratory arrest and was later found to need a ventilator nearly 24 hours a day. But I learned and got used to it all. And I found that God had created him with a special tolerance level or something. He takes this all in stride so well and is an inspiration to so many all over the world. I'm so glad he is able to be here with me. And I think he has a very bright future.

Anonymous said...

Hi Vanessa,
I'm a pediatrician in Canada and I've been following this story too. I think your son's nurse is misinformed, as so many people are. Joubert syndrome is much more severe than CCHS (I've had patients with both conditions) and while the parent support groups are correct in stating that some children with Joubert syndrome have close to normal health and less severe mental and physical disability, some are quite severely affected and don't live long off life support.

pinktoepoish said...

Science can only go so far at a time like this. How many times have children( as they so love to do) proven experts wrong? I'd rather they have a few years of hope and faith than a lifetime of regret.

Thare said...

I agree with you.
This story so hurts my heart.
I saw this at 2am yesterday morning as I was giving John a breathing treatment...I honestly thought I did NOT hear the story correctly. God's mercy has to kick in. And who are we to decide who should live & who should die...and how do you know...or can a person say "their child has endured too much". With this being holy week...what if Mother Mary would have stepped in as they were beating our Savior and said..."that's enough...He has endured to much"...where would we be today?? God is the one...and only one who knows how much we can endure. If for one second I thought I would have to "restrain" my child during the that he could live another day...of course I a heartbeat!! And for them to say they "just need her to go to sleep"...have these people even heard of God and His will?? Ugh...the more I think the more just...frustrated I get! Well...there is my 5 cents worth!!
Thanks for bringing this story to us!

Thare said...'s the latest in the paper...

Kaylee's parents, Jason Wallace and Crystal Vitelli, said they were taking the new situation “by the moment.” Their daughter surprised everyone with her resilience, and doctors said she may even be able to return home at some stage.

They were letting her die the night before!! What the heck is the matter with our world?? Please tell me I am NOT the only one confused and heart broken!!

Anonymous said...

The parent's are happily manipulating the media, and giving false impressions of the excellent health care offered by the Toronto Hospital for Sick Children. The mis-information IS NOT medical information supplied by any licensed health care practitioner, but words chosen by the father who chose to turn his daughters misfortunes into a media circus. Sources inside the hospital have been clear that the girl would be able to live 10 or more years with the proper care before her kidney functions ultimately ceased.

The media is unaware of a large number of facts that aren't available (for legal reasons) This story.. should never have been a public one.

Discovery Documentary - Life or Death : Battling to Breathe