A Trisomy 18 Journey - For Professionals

For Professionals

If you are a medical professional or caregiver, thank you for caring enough to read this! You are such an important part in the entire journey that starts with the diagnosis but goes on long afterwards. When a parent receives a prenatal diagnosis of Trisomy 18 or another disorder that is considered "incompatible with life", the news is devastating. I have heard many stories, good and bad, about how professionals have worked with parents of children with Trisomy 18. And I think there are several things you can do to provide support and assist in the grieving process.

First, be aware of the impact of your first words after the diagnosis or suspected diagnosis. I have heard many stories that vividly recount the exact words said at that time. They are forever ingrained in the parents' heads, to be relived again and again. It is critical that those words are carefully chosen and said with compassion. As medical professionals, you need to realize that just seconds after the initial diagnosis, parents are not looking for practical solutions; they are looking for emotional support and stability. They are just trying to get their bearings.

I think that as professionals, you really want to help "solve" this problem you have just presented by offering the options immediately. What is often overlooked is that you can't solve it! Terminating doesn't solve it, carrying to term doesn't solve it, miscarrying doesn't solve it. None of the options solve it. This problem is not solvable. If you realize that, you need to respond to the parents - see what they need at the moment. When they want to hear the options, they will ask. Until then, stop giving them facts and simply hurt with them.

Second, realize that the value of a child's life is not related to the length of that life, nor even to whether or not the child will survive. Try to present the options as just that - options. Many parents were made to feel inferior because they chose to carry their child to term instead of terminating. This is possibly because it was assumed that they didn't understand the severity of the problem. But that isn't the case. It is because of the value of their child's life and they felt it was the best decision for their child. See the Carrying to Term Resources page to read the MYTHS about Trisomy 18 that even many professionals aren't aware of.

Third, SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) has a section of their website specifically for professionals: SOFT - A Guide for Professionals. In it, SOFT's medical advisor and cofounder Dr. John Carey, who is a pediatric geneticist, offers some information from research and lists three themes found throughout the research:

It is important to recall that about 5-10% of children with these syndromes do survive the first year of life, thus, the condition is not universally lethal as sometimes presented by health professionals.
While the developmental disability in children with trisomy 18 and 13 is significant, it is important to recognize that children do advance to some degree in their milestones. They can interact with their families, smile and acquire some skills, such as rolling over, self-feeding, etc. if they survive infancy.
Families in these situations appreciate the opportunity to participate in decisions involving the care of their children.

These themes are taken from SOFT - A Guide for Professionals. For the full text of the article, please click on the link.

Fourth, realize that different parents will make different choices about the care for their child, and respect those choices. One of the things that was really helpful to me was talking with the case manager at the fetal maternal center. When I was ready, she just mentioned, one by one, all of the resources available to see which ones sparked interest for me. This included termination, comfort care, surgical intervention, physical therapy, hospice, etc. Her approach was not recommending anything, but offering them all as options for me to choose from. And once I indicated a certain direction, she helped me go that way.

If you, as professionals, can offer this same sort of care and support, it will help make the parents' time with their baby more beautiful. Too many parents have had to fight to do what they felt was best for their babies. It is sad to hear of those who had to fight to have surgeries on their babies, or to not have intervention, or to fight to say goodbye to their babies in a hospital not in a clinic. This is a difficult, awful thing. Parents shouldn't have to worry about fighting these battles along the way!

Finally, if you are a caregiver of a child with trisomy 18, you can add significantly to the wonderful memories that the parents are making with the child. Realize that these children are an incredible source of joy for the parents and your love and acceptance of the child will only add to that joy. Help them make many lasting memories: pictures, videos, footprints, hand and foot castings. Encourage them to sing to, talk to, rock and love their child without reservation. Talk to and about the child by name, and admire his or her loveable characteristics.

And if the baby dies (or is born still) during your care, encourage the parents to spend as much time as they need with the baby - even all night if they want to. Many times parents want to do something but aren't sure they are "supposed to", so your encouragement may be what they need to act on the things they are thinking. Encourage them to rock and hold and love the baby and to do whatever feels right to them. Encourage them to dress and bathe the baby and to rub them with lotion or baby powder (and the scent will be a lifelong reminder of their child), and offer to take pictures - there can't be too many pictures.

Symbolic gestures are very significant - no matter how small. Suggest something symbolic in memory of their child - lighting a candle, a special stuffed animal, a blanket, a song, a rainbow. Offer a listening ear, and continue to refer to the baby by name, even months or years later. Hearing their baby's name spoken by someone else is music to a parent's ears.

Just realize that these are children, not diagnoses, and anything you can do that respects that life and the parents will help immensely. I would also suggest you refer the parents to the Trisomy 18 Foundation to see many, many stories of children with Trisomy 18 and to find out what it is really like from those who have been there. This is the best way to help the parents make decisions about caring for their baby. Unlike the phrase "incompatible with life" these children live incredible lives, brief as they may be. And some live minutes, hours, days, or even months - and those moments are treasured by the parents. So please don't discount the value of their lives, just because they are brief.

Thank you again for your concern about supporting those families of babies with Trisomy 18.

Additional reading:

For Debate: Continuing with pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management