Nimkee Angel Day in SickKids NICU

It is becoming more common to see families posting photos at the end of their child's life and yet each time I see such pictures I am thankful for the parents amazing sharing. My Baby Is An Angel is a blog by a mom of six children honoring one child still born and later named Noah-Alexander (along with her guilt about the silence accompanying this birth) and Bennett-Chadlen "Nimkee" born with Trisomy 13 who died at one week. The website includes links to resources and other family sites and Melissa later wrote a letter wishing parents and staff were more aware that Trisomy 13 is not always a condition 'incompatible with life'. Family photos on Picasa include a poignant transition from mom's pregnancy to grief and death in the NICU and a beautiful set of photos by a photographer with Now I Lay Me Down To Sleep of Nimkee's death in SickKids NICU. Bennet died surrounded by his family's love and tears and father Chandlen playing a song composed for his son. You can hear the song accompanied by the pictures below. Thanks to Melissa and Chandlen for sharing these moving and unforgettable images of Bennet's life.

Make an on-line slide show at www.OneTrueMedia.com

Under a video of Bennet, his mom writes:

~Breaking the silence of the taboo subject of Infant Loss~

~The background music was written and recorded by Bennett-Chadlen's father, Chadlen. He wrote the guitar portion while he was in the NICU, and this is what our sweet boy heard as he drifted away in our arms.....this montage captures our final moments together. Viewer discretion is advised. I realize that many of you may not understand why a family might want these photos, but they're all we have to hold onto.

~I share this with you.....it's your choice whether you view it or not. Upon viewing, you will understand what we went through....please show compassion to any grieving mothers that you know. Even if you don't have words, a tender touch is enough.

~I'm here to break the silence....so many like me don't have to feel so alone.

~We will never forget, and we want you to always remember.

Nimkee's Facebook page has 169 members!

Learning from the life and death of Annie Farlow

Parents of children with severe medical conditions face many fears about their children's quality of life and long term prospects and open communication with a skilled and empathetic medical team is an anchor support. Parents of children with severe cognitive deficits may face another fear, however, that hospital care priorities or individual staff prejudices (however benevalently framed) will impact their child without being transparent in the care discussion.

Annie Farlow arrived in this world to a loving family, aware of and prepared for the cognitive and developmental impacts of her condition. Barbara and Tim Farlow's journey to understand the circumstances of Annie's death in an unnamed Toronto pediatric ICU challenge us to look at one of the most disturbing fears of parents of seriously challenged children:

"Do some doctors play God with disabled kids? Are treatable but possibly fatal problems, such as digestive obstructions or respiratory difficulties, sometimes left to take their course when a child has a condition like cerebral palsy or Down syndrome or, in Annie's case, Trisomy 13? Do some medical professionals mask their own quality-of-life opinions by giving parents only the worst-case scenario, leading to what Farlow calls "misinformed consent"? What can families do to change things?... As a member of the Canadian Patient Safety Institute and Patients for Patient Safety Canada, part of the World Health Organization's Alliance for Patient Safety, Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating prolonging life at any cost, she emphasizes. It's about patient-centred care in which the family is included in an informed decision-making process. Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable."

You can read the full article by Helen Henderson and view the family website that remembers Annie and reminds us all that the ultimate test of patient and family centred care is its application to the most vulnerable of our developmentally challenged children.