Which advice would you give to someone who has just been diagnosed with Anencephaly?
See some advice from people with experience in Anencephaly to people who have just been diagnosed with Anencephaly
First and foremost, I want to express my deepest sympathy for your diagnosis of anencephaly. It is undoubtedly a challenging and emotional time for you and your loved ones. While I am not a medical professional, I can offer some general advice and support to help you navigate this difficult situation.
1. Seek emotional support: Receiving a diagnosis like anencephaly can be overwhelming, and it is crucial to have a strong support system. Reach out to your family, friends, or a counselor who can provide emotional support and understanding during this time.
2. Educate yourself: Learning about anencephaly can help you better understand the condition and its implications. Consult with your healthcare provider to gather accurate information about the diagnosis, prognosis, and available options. This knowledge will empower you to make informed decisions.
3. Connect with support groups: Connecting with others who have experienced or are going through similar situations can be immensely helpful. Support groups, both online and offline, can provide a safe space to share experiences, ask questions, and find comfort in knowing you are not alone.
4. Discuss your options: It is important to have open and honest conversations with your healthcare provider about the available options for managing anencephaly. They can guide you through the potential medical interventions, palliative care, and end-of-life decisions that may arise.
5. Take care of yourself: Caring for your physical and emotional well-being is crucial during this challenging time. Engage in activities that bring you comfort and peace, such as practicing mindfulness, seeking therapy, or participating in support groups. Remember to prioritize self-care.
6. Consider seeking a second opinion: If you have any doubts or concerns about the diagnosis or treatment options, do not hesitate to seek a second opinion from another qualified healthcare professional. It is essential to feel confident in the information and guidance you receive.
7. Make memories: While the diagnosis of anencephaly may bring immense sadness, it is important to cherish the time you have with your baby. Consider creating memories through photographs, keepsakes, or spending quality time together. These precious moments can provide solace and comfort in the future.
8. Seek legal and financial advice: Anencephaly may have legal and financial implications. Consult with professionals who specialize in these areas to understand your rights, entitlements, and any available support or assistance programs.
9. Lean on your faith or spirituality: If you have a religious or spiritual belief system, draw strength from it during this challenging time. Seek solace, guidance, and support from your faith community or spiritual leaders.
10. Take one day at a time: Coping with a diagnosis of anencephaly is a journey that unfolds differently for each individual. Remember to be kind to yourself and take things one day at a time. Allow yourself to grieve, process emotions, and find moments of joy amidst the difficulties.
Remember, this advice is not a substitute for professional medical guidance. It is essential to consult with your healthcare provider to receive personalized advice and support tailored to your specific situation. They can provide you with the most accurate and up-to-date information regarding anencephaly and its management.
defect is heartbreaking and shocking. There is no
other way to describe this terrible news.
Everything you wanted for your babyyour hopes
and wishesare gone with the news of this fatal
defect. Nothing will ever be the same again. Your
pain and grief are very real and very normal. You
will not grieve more if your baby lives longer or less if
your baby dies very soon. Grief is intense and can't
be avoided or lessened. It may, however, be
increased. In our experience, we have never heard
of any parents who carried their babies as long as
they could who regretted that decision, but we have
heard of parents who ended the pregnancy early
and did regret that decision very much.
A carefully planned farewell to your child is the first
step you can take to deal with that grief.
Take the time to prepare for the birth and death of
your baby. Your baby deserves to be welcomed in
love and to be given a dignified farewell. Your child
is a small human being even if he or she cannot live
long.
You can give your baby a name and hold and cradle
your baby in your arms when born even if your baby
is stillborn. You can admire and cherish your baby. If
you cover the opening on the head with a cap or hat,
you can focus fully on your child.
Don't forget to take photos and footprints; these will
be priceless memories.
Unfortunately, burial or cremation costs are not
covered expenses in the USA for our babies.
But having even a simple memorial ceremony is an
opportunity to say a farewell to your baby. The pain
felt at the time is very intense, but you will feel that
pain no matter what. For closure or relief of grief, it
can be important to have this ceremony and some
place to feel your sadness. This can be a burial
place, a memorial garden, even a small memory box
in your home where you put photos or other things
that remind you of your baby. This is an official
testimony to your child's reality because your baby is
a real human being despite the deformity. If your
baby is cremated, you may wish to pick a special
place to scatter the ashes, a place of comfort and
meaning for you.
(Source: http://www.anencephaly.info/pdf/anen-info_2006-USA.pdf )
Posted Aug 16, 2017 by Lisa 1685
