Healthcare Professionals
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
In helping the parents understand their options, first, 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. Second, realize that different parents will make many different plans about the care of a child with disabilities, and they need you to respect those choices. After having had time to learn about the nature of Trisomy 18 and how it affects their unique child, the parents will need your compassionate assistance to implement their treatment plans for their child, including discussions of end-of-life care that might be necessary.
Remember, Trisomy 18 is a genetic diagnosis. It is not a medical prognosis of how this specific child will be affected.
There are many resources available through the Trisomy 18 Foundation on our website and through contacting our staff to assist you in caring for your patients. Please assist families to learn about the whole range of medical options available, not just what options you personally would choose as a parent in this situation. Treatments and service options should include interrupting the pregnancy and delivering early, perinatal hospice programs, DNRs and comfort care, surgical interventions, early intervention and therapy, hospice, and much more.
Try not to recommend anything until they have heard about all of the options and asked all necessary questions to clarify their own understanding of what is involved in each of these options. This will help you develop an appreciation for the family’s religious needs and practices, cultural sensitivities and preferences around topics of disability, and their values and belief about end-of-life care. Creating opportunities for dialogue and discussion, rather than simply giving them information or answers, will help you to offer them better guidance aligned with their values and beliefs.
You have a large role to play in facilitating parents' healthy recovery. Skewing, misrepresenting or leaving out possible options for treatment at the beginning of this process when the diagnosis is made can cause parents to experience great anguish and confusion in their healing and recovery from the loss of a child to Trisomy 18. Learning after the fact that there were options available that they were not informed of when making decisions about the care of their child will complicate and prolong the grieving process significantly.
The challenge will be to embrace the multi-disciplinary care perspective to incorporate both obstetrical and pediatric care models when assisting the parents in making decisions as guardians of their child’s best interests and to do this without prejudging in advance the outcome for the child’s life.
Although difficult, compassionately caring for a family and their child while they are going through this emotionally fraught experience is never futile care.
Many parents have reported that they have been made to feel they are being irrational and treated dismissively because they chose to carry their child to term instead of terminating. Providers may assume that parents don’t understand the severity of the problem and are hoping "the doctors are wrong."
But this is usually not the case. Parents who decide to carry to term simply feel it is the best choice for their child and for their family. While some make this choice due to religious reasons, many do not. The families making this choice often desire to allow their child to achieve his or her full potential, whatever that may be. They also feel that having time with their child to make memories would be helpful to the healing of the entire family.
Parents making this decision face a complex set of psycho-social issues, in addition to the medical issues their child faces. These decisions are extremely difficult and deeply personal. Regardless of their decision and whether you feel you would make the same one, all parents deserve to have their decisions about their child’s health respected by their healthcare professionals. And all children, regardless of their diagnosis or prognosis, deserve to be treated with dignity and compassion.
Families who interrupt their pregnancy usually do so as a treatment decision because they feel it is in the best interest of their child as an “end-of-life” care decision made prenatally rather than during birth or in a neonatal care setting.
They often feel that carrying to term was not possible for them or their families due to medical concerns for the baby (most were very concerned about not wanting to risk their child suffering in a painful dying process) or the anguish that they feared carrying to term might cause their surviving family members (usually their living young children).
For some mothers, it is medically necessary to preserve their ability to have more children in the future (although it is very rare for a Trisomy 18 pregnancy to cause harm to the mother’s physical health).
Others have informed us that they felt they were not fully educated by their doctors about the whole range of outcomes for children with prenatal Trisomy 18 diagnoses and thought that termination was their only real option. Not surprisingly, this set of parents often experience more complicated and conflicted grieving, feeling that they may not have made fully-informed decisions for their child. They may grapple with guilt or regret. These parents may express wishes after the fact about what might have been if they had been able to experience some time with their infant alive after giving birth, however brief, while still preparing for the possibility of a stillbirth. That is why helping parents fully understand the range of options available to them and allowing them to make fully informed decisions about their child’s care is so critical.
We recognize that each mother’s medical history is different and may cause her to have only certain options available. Your role as her doctor is to give her the best medical advice available for her unique case. It’s important to focus on the specific Trisomy 18 pregnancy the patient is experiencing and this unique child, not just providing generalized information about Trisomy 18 as it applies to populations in medical texts.
Thoroughly reviewing options with parents and ensuring that they fully understand is key. You may need to schedule additional appointments to go over questions that arise or to simply offer reassurance and support. They may want additional testing or ultrasounds to help them feel more sure about their decisions. They may repeat questions or want to discuss options multiple times, and some parents may even want to pursue a second opinion. Being patient and compassionate can go a long way to helping to facilitate the parents' healthy recovery and avoiding the complex grief that can be brought on by a lack of information or the feeling that they were rushed into a decision hastily.
By offering the parents more 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. This sense of having done the "right thing for their child" helps in the healing process of a grieving family. A diagnosis of Trisomy 18 takes away so many choices for a family. Assisting them with as many opportunities as possible to exercise some control and make decisions where there are options available will help them regain some sense of power over their circumstances sooner and reduce the trauma and grief induced by this difficult process and the procedures that they and their child may undergo.
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.
Below are some common decisions parents
facing the loss of their child must face.
Instead of directly asking if they would like to see and hold their baby, ask if they had thought of seeing the baby and invite them to share their feelings. Many times fears about what the baby will look like arise. Let them know that if this is a worry, a nurse or provider can prepare them for possibilities, i.e., skin tears, skin discoloration. You can also let them know they can hold the baby for as long as they wish, wash or dress their child, or wrap the baby in a special basket. Reassurance is given that this decision can be made during or after the birth and that they can have as much time as they need. Address their fears as honestly and compassionately as possible. If the use of a Cuddle Cot is an option, share that option with parents and encourage them to take advantage of it if they want more time with their child.
Hospital mementos may include the crib card, baby beads, ultrasound and/or other photos, a lock of hair, feet and handprints, and a record of weight and length. Explain what mementos are available to them, and give them the option of selecting which ones would be meaningful for them. Parents have also found great comfort in providing their own mementos, such as a special outfit they have brought from home, a blanket, stuffed animal, photo props, or other items. Any item that the baby came in contact with often means a great deal to the parent, such as a hospital-issued blanket or a prop from the picture. These items provide tangible evidence that this baby did exist, and it has been found that they aid in the parents’ healing. Parents may also be overwhelmed, and it can be helpful to let them know what items can be held onto and for how long should they decide they would like them at a later date.
Naming a child that they have lost can be incredibly difficult for parents. Instead of directly saying, "Are you going to name this baby?", it can be helpful to gently ask, "Do you have a name picked out for this baby? Can you share it with me if you feel comfortable naming this baby?" If they say yes and share a name, make sure to use the name frequently. But also honor their decisions if they don’t have a name chosen or don’t want to choose a name. Let them know "Baby Smith" is an option if that feels comfortable and also that they can always make a decision to name their baby at a later date if they wish.
Discuss with parents their cultural and religious practices around death and grieving, and ask what practices they would like to engage in. Offer them the support of the hospital chaplain, a minister, rabbi, priest or other faith leader appropriate to their faith and cultural traditions who can support them during this journey.
Often the parents are frightened by the prospect of an autopsy or they are not clear about the need or reason for an autopsy. Offer to explain the procedure and the possible benefits and discuss their fears and concerns. Let them know they have a choice of a full autopsy or chest and abdomen only and discuss the other genetic testing options as well. Many will ask if they will get an answer to the cause of death and also how long it takes to get the results.
Instead of asking the family, "Are you going to have a funeral?”, it is better to ask, "Can you share with me your feelings regarding having a funeral?" Acknowledge how difficult planning a funeral might be for them since this could be the first time young parents may be attending the funeral of someone in their immediate family, let alone planning one for their child. Let them know you will help them with this process, along with their minister or faith leader, if applicable, and/or a funeral director. Help them understand the range of options available to them, and encourage them to plan a ritual or ceremony that is individualized to their wishes, beliefs and preferences. It is vital as caregivers that we are aware of state and local regulations regarding burial. If their wishes are within regulations, they should be honored.
Sometimes parents are unsure about this choice. It’s important that parents understand that this will be their only opportunity to have photographs taken. Many parents decline having photos taken and later come to regret that decision. But no one should be forced to take or to see the pictures. Often, offering to keep the photos in a safe place should the parents ever want to see or have them can help parents who do not wish to see photos now but want to reserve the option of changing their mind at a later date. When taking these special pictures, positioning the baby, using special props and clothing are all appropriate. It is important to take a variety of photos and even video record the baby if the parents would like. Organizations such as Now I Lay Me Down to Sleep provide professional photographers at no cost and can be a wonderful option for families who want professional-quality photos taken.
But remember, some parents may be uncomfortable and refuse to have any pictures taken or only want a very limited amount, and this should be accepted. Parents should not be forced or coerced into anything.