Published today, a brief article by a parent of a child with trisomy 18. Please read it, it won’t take more than a few minutes, but it could make a difference to how you interact with the next parent who has a baby with a serious condition.
I hope Alison Pearson and the BMJ won’t mind if I give you a taste of her advice to medical staff, in case the article isn’t freely available everywhere. I have shortened and edited her ‘bottom line’ but, if you have access, the longer complete versions are worth reading and taking to heart.
-
Be aware of your ability to create self fulfilling prophecies. It is easy to limit a child’s chances by being pessimistic about what they will or won’t be able to do in the future.
-
If you need to ask about a ‘do not resuscitate’ decision, discuss it once and then record the response. It is definitely not a “tick box” question to be asked routinely at every admission.
-
Don’t try to destroy a family’s hope. There is no such thing as “false hope” whether or not it comes true, it can help today to be manageable
-
Remember that parents need help too, not just babies and children. It helps when healthcare workers treat our children as though they will recover, rather than assuming that they won’t.
-
Acknowledge that our children are beautiful, happy, and much loved; be pleased by their progress, and give us good news, as well as bad.
-
Using terms such as “dysmorphic features” and a “lethal condition,” as well as talking about her “end of life pathway” in front of our children and their siblings is simply not respectful. Think carefully about the words you choose to describe children to their parents, and in the presence of siblings.
Neonatal Research 
What a lovely article. “Quality of life” means different things to different people and that is ok. This family is just that, a family. Love the points Alison Pearson makes.
I am also a parent of a baby with Edwards Syndrome. We have had some wonderful doctors and medical professionals who were both realistic and hope filled. We have also run into a few who made judgement calls about our baby before she was born. She is almost 8 months, has undergone a very successful heart surgery and is thriving. She does not require any medical assistance other than a g-tube at home and the only medication she is on is reflux medication. Edwards Syndrome (or Trisomy 18) is not a lethal diagnosis and I appreciate the great advice in this article.
A wonderful and important article. The family is lucky – in Norway, parental wishes regarding do-not-resuscitate orders are not always respected, orders are placed against their wishes. This is an enormous burden to some parents as they never feel safe, they are never able to trust that their baby will receive life-saving treatment if needed. No family should have to live with that. They know that their child is loved and enjoys life, that their child is as deserving as any child of emergency health care.
My daughter was diagnosed in utero with trisomy 18. I am a physician, but my doctors managed to convince me that my daughter was incompatible with life. She was denied treatment both during delivery and after, and lived for only three days. We will never know what might have happened, had she been treated as any other sick baby, had we fought harder for her.
I have since come to know many Norwegian families with children with trisomy 18, the oldest was 37. It pleases me to see that they do live fulfilling, loving lives, that they do communicate and interact with their families, that they have their own personalities, and best of all, they seem happy.
I have co-authored a couple of narratives from my trisomy journey, and also written a book, hoping it may be of help to other families who receive a grave diagnosis, either in pregnancy or after birth, see the links below
Thanks again, Dr Barrington, for your wonderful blog.
Siri Fuglem Berg, MD, PhD, trisomy mom
http://www.ncbi.nlm.nih.gov/pubmed/23734063
http://www.ncbi.nlm.nih.gov/pubmed/24102789
http://www.amazon.com/EVY-KRISTINE-Siri-Fuglem-Berg-ebook/dp/B00NQ78YX4/ref=sr_1_1?ie=UTF8&qid=1430985710&sr=8-1&keywords=evy+kristine
Thank you for sharing this. We were asked to sign a DNR 3 times in my daughters 11 day stay in NICU after birth. My daughter is living with full trisomy 13 – Patau Syndrome. http://trisomy.org/?our-story=natalia-marie She is a delightful child and brings smiles, hugs and joy to our daily life caring for her. She’s overcome many milestones and medical issues that come with this syndrome. Natalia understands, she responds and she walks with our guidance. There is a tremendous amount of support now for trisomy conditions. Please be sure to visit and see the wealth of support at
SOFT Support Organization for Trisomy 18, 13 and Related Disorders
http://www.trisomy.org
and also
ITA International Trisomy Alliance
http://www.internationaltrisomyalliance.com
Both of these websites offer free ebooks for Families and Professionals.
You can follow the family stories as they add new or update to the SOFT website.
http://trisomy.org/?page_id=2889
SOFT’s facebook page remembers and honors the children on their Birthday’s so within the year you’ll see all of the stoires.
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders
Like many families we live one day at a time and embrace each day to the fullest.