Trisomy 18 Foundation

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Helping parents make choices

Why some parents Carry to Term
How you can help parents
Why some parents Say Goodbye Early
Additional reading

 What are a parent’s next steps when faced with learning of a prenatal Trisomy 18 diagnosis for the child they are carrying?
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 for a child with disabilities when it comes to imagining their family’s future, and they need your respect of 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 here online and through staff contacts 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, etc.   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 appreciation for the family’s culturally sensitivities and preferences around topics of disability and end-of-life care, religious needs and practices and will help you to offer them better guidance. 


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 diagnosis is made can cause parents to experience great anguish and confusion in their healing and recovery from the loss of child to Trisomy 18. Learning after-the-fact that there were options available that they were left unaware of when making decisions for the care of their child will complicate and prolong the greiving 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. Preventing parents living with those types of regrets for a life time is something you play a large role in facilitating.  And compassionately caring for a family and their child when learning about a Trisomy 18 diagnosis prenatally or soon after birth is never futile care. 


Why some parents Carry to Term
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. This is possibly because it was assumed that they didn't understand the severity of the problem and are hoping "the doctors are wrong." This is usually not the case; they simply felt it was the best choice for their child. 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 members of their family.

Here is some information we have compiled for Families considering Carrying to Term, including links to stories of families who have made this choice. This information may be helpful to you as a health professional to help you understand the psycho-social issues parents are facing, as well as the medical.

Why some parents Say Goodbye Early
Families who interrupt their pregnancy usually did so as a treatment decision because they felt it was in the best interest of their child as an “end-of-life” care decision made prenatally rather than during birth or in neonatal care setting.  They felt 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 was 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 greiving, feeling that they may not have made fully-informed decisions for their child.  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. 

How you can help parents
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 as you understand it in her case. And as her Doctor, we recommend that you thoroughly review the alternatives with the mother. You have great influence over a mother, and she needs you to provide her with accurate information about her specific Trisomy 18 pregnancy and this child, not just generalized information about Trisomy 18 as it applies to populations in medical texts.

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 my 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 will help them regain some sense of power over their circumstances sooner and not be as traumatized by the process and procedures that they and their child may undergo.

 

Additional reading:

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

Is there a reason to continue having ultrasounds after a Trisomy 18 diagnosis?

Related Areas
Overview of Trisomy 18
Latest research
Breaking the news - tips
Helping Parents Choose
Helping Parents Heal
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