Nursing Diagnosis...

I have come up with four nursing diagnosis that is related to the parents of children with holoprosencephaly.

At risk for powerlessness R/T helplessness AEB fetal demise




Caregiver role strain R/T increasing care needs and medical appointments AEB tiredness, crankiness, and low patience









Interrupted family processes R/T change in family roles and structure associated with progressive disability and eventual death of family member AEB difficulty accepting or receiving help appropriately



Complicated grieving R/T sudden loss of pregnancy AEB non viable fetus

Support Groups...

Families for HoPE is a non profit organization that addresses the needs of families and children with holoprosencecphaly and related malformations of the brain. They provide support for all stages of holoprosencephaly. They have a yearly conference that everyone can come and meet each other and know that they are not the only ones. Here is the link to their support group:
http://familiesforhope.org/





The National Organization for Rare Disease website provides tools and resources for the families. There is a patient assistance program that can help with medications and other needs for them. They also provide workshops throughout the year for families and caregivers amongst other services.
http://rarediseases.org/   

This is a Yahoo group that provides support for holoprosencephaly. It is a restricted group and needs membership approval. Families for HoPE is part of this group.
https://groups.yahoo.com/neo/groups/holoprosencephaly/info






This group is also from Yahoo group and it's a loss support of holoprosencephaly. Again, it is a restricted group and needs membership approval.
https://groups.yahoo.com/neo/groups/holoprosencephaly/info 

Apps for your phone to help you!

Here are a few apps that you can download to help get through life with holoprosencephaly. I hope you will take a look at them and see if it's something that may help you or someone you know out.




The first one I would suggest is the Inspirational and Motivational Quotes. Reading a daily quote will get you through those tough times just when you need it.        

Caring Bridge is an app that you can create a website to share updates and your story. Others could give you support and encouragement while reading the updates.

My Med Schedule is where you can put in all the medications that is being taken all in one spot. It also  helps to remind you when medication is due and when to refill the prescription.

 

The last one that I would recommend is My Medical. My Medical provides a place to keep all the medical information in one spot. You can keep immunization records, doctors contact information and lab results.

Web sites to help guide you

Here are a few websites to check out about holoprosencephaly. Hope you enjoy!

http://www.ncbi.nlm.nih.gov/books/NBK1530/

This gives the clinical characteristics, diagnosis and testing that can be done for holoprosencephaly.  Genetic counseling, management, range of findings of the four different types and the clinical manifestations.

http://www.dshs.state.tx.us/birthdefects/risk/risk5-holoprosencephaly.shtm

This is from Austin, Texas that gives the genetic basis about holoprosencephaly, the embryology, and the demographic and reproductive factors. It also talks the prevalence in the United States.

http://ghr.nlm.nih.gov/gene/SHH

This site talks about the SHH gene. What the gene is and how it affects the development of the fetus. It also gives information on where to find more information about this particular gene or other general information about genes.

http://www.webmd.com/brain/holoprosencephaly-10542

Gives a quick summary about holoprosencephaly. It also gives information about other resources that may be used, for instance, it gives the phone number and address for the Genetic and Rare Diseases Information Center