This blog was initially intended mostly for health professionals (especially neonatologists and pediatricians in training) and others interested in academic neonatology, with the hope that some other people might find it interesting.
The reaction to my post on Annie Janvier’s paper has been humbling; over 1600 page views in 60 hours, and the counter is still mounting.
I would encourage anyone who interacts with families of children with serious chronic medical conditions to read the comments under the post. I started trying to respond to all the parents’ comments, but then there were so many (and I have also just gone on vacation) that it became impossible, but I have read them all, (and rescued 3 from the automatic spam filter that were not spam, so they appeared out of chronological order). What is very evident is that most of the families who posted comments had very similar, but also very individual experiences. Most of them had negative initial contacts with their doctors, obstetricians, family doctors, pediatricians, or neonatologists; despite this they tried to get for their children what they felt was in the infant’s best interest, and finally most have found someone supportive, positive and helpful, who had made a big difference in their lives. They all report what a positive experience it was (or is) to live with a child with very serious limitations. Unfortunately one or two are still battling doctors who are convinced that their children would be better off dead, but they are a minority.
My sincere hope is that some of the health care providers reading this blog will have their attitudes changed, and that we will all have a deeper appreciation of the love and happiness surrounding children with serious conditions, be they chromosomal, genetic, or multifactorial, and an understanding of what a positive contribution they can make to our society. I don’t think you can read the stories in these comments and not be deeply moved: unless you have a heart of stone, and if so, you shouldn’t be in health care!
Just a brief additional note. If you leave a comment for the first time I have to approve it and thereafter you can leave comments without approval, but I still read them all, and I will delete anything that is abusive. I have seen some distressing comments on youtube and other sites, and I have no intention of giving a forum to anyone who abuses a parent of a child with impairments, or that child. On the other hand if you want to disagree with me or correct me (or even abuse me;-)) that is OK, and I will approve anything that is on topic. So far I have not had any hesitation in approving any comments.
Thank you for your lovely comments about our children I am the mom of a 31 year old young adult with full Trisomy 18 She is a joy and her love is unconditional We would not change anything in our life.
Thank you for your kind words about our kids. I am a mom of a 31 year old young adult with full Trisomy 18 and would not change our life for anything., She has brought joy and unconditional love to many.
Thank you so much for “getting it”! I think your insight and humanity has gained your site a new set of followers. 🙂 And there are many of us out here waiting and willing to participate in additional studies to help bring about even more understanding about our children. So much to learn and share!