Patients facing a prenatal or postnatal diagnosis of trisomy 18 for their child are undergoing an emotional and fraught experience, and the right support from their health care providers can make a world of difference.
We know you want to support your patients and help them make informed decisions about their child’s health. Our provider resources can help you provide your patients with the compassionate and supportive care they need during this difficult time.
How to Break the News to Patients
When you have to inform the parents that their child has Trisomy 18, be aware of the impact of your first words after the diagnosis or suspected diagnosis. Many, many parents can vividly recount the exact words said at that time, months and years later. 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. Soften the blow as much as you can by showing genuine concern and empathy for the family.
As medical professionals, it is important 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. Silence is appropriate, until the parents ask, “What is the next step?”
As professionals, you are accustomed to helping and healing, and you want to do the same in this situation. Often professionals who really want to help the parents "solve" this problem begin offering the options immediately. What is often overlooked is that this problem unfortunately can't be solved. 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.
The best thing to do is to respond compassionately to the parents and discern what they need at that moment. When they are ready and able to hear about treatment options, they will ask. Until then, don’t launch into a discussion of options to fix the situation or treat the child. Respond to their lead, answer the questions they ask at the pace at which they seek additional information, and most importantly, be emotionally present with them and respond compassionately as you help them adjust to their new reality and new roles as parents of a child with Trisomy 18.
Helping Parents Make a Decision
Supporting Parents of a Living Child
When a Trisomy 18 diagnosis is made postnatally, providers face a complex situation in supporting parents through this journey. It’s essential to treat the family and the child with dignity, respect and compassion. Recognize that though this is a very difficult situation for parents, this is their child who they love dearly. Every moment and every milestone with their child carries a great deal of importance that they will no doubt cherish deeply. Being respectful and cognizant of their need to bond with their child and create as many memories as possible is critical.
But parents caring for a child with Trisomy 18 face many challenges and have many decisions to make. Should they choose comfort care? Will they get to take their child home, and if so, when? Should they use a feeding tube? Should they have surgery? When? What about occupational therapy? Is there any financial assistance available? What about child care? The list is long.
As with a prenatal diagnosis, you should thoroughly review options with parents and ensure that they fully understand the treatment options and supports available to them. By offering the parents information about all of their child’s medical options, they can be empowered to make the choices they truly feel are best for their family.
Support Grieving Parents
Often a family’s tendency is to try to rush through this situation to “get past it” so they can get on with healing. What they don’t realize is that healing can begin right after the diagnosis, and medical professionals can assist in that healing. Step one toward that healing is being given the diagnosis in a sensitive, compassionate way, and the second step is helping parents make the choices that they truly feel are best for their child.
The third step is realizing that the family deeply loves this child and will want to have meaningful memories of him or her. You can add significantly to the 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.
Ultrasound pictures become much more meaningful when faced with a Trisomy 18 diagnosis. Be sensitive to the parents’ wishes in this area. Anything belonging to the child is also important—even a copy of the karyotype may be treasured.
Symbolic gestures are very significant—no matter how small. Suggest something symbolic in memory of their child—lighting a candle, a special stuffed animal or outfit, a blanket, or a song. 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.
If the baby dies or is stillborn 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 hear. Encourage them to rock and hold and love the baby and to do whatever feels right to them. Suggest they dress and bathe the baby if they would like and to rub him or her with lotion or baby powder-—the scent will be a lifelong reminder of their child—and offer to take pictures.
Realize that this is a child, their child, not a diagnosis. Anything you can do that respects that life and the parents’ relationship to the child will help immensely.
But it’s also incredibly important to respect parents’ wishes and decisions. Some parents may decide not to hold or see their baby or they may not want photographs. Again, parents are dealing with a complex set of psycho-social issues as they face the death of their child and factors such as religious beliefs and practices, cultural identity, and personal values will all contribute to their decision. Always respect parents’ wishes and abide by their decisions. Never violate their right to make decisions about their child by going against their wishes or decisions because you believe they have made a wrong one, even if you have the best intentions.
Remember, there are no right or wrong choices. Each family must make the decision that works best for them.
Below are some common decisions parents
facing the loss of their child must face.