What is an Adverse Prenatal Diagnosis?

 

The doctors inform you that your baby may have a mild or serious medical problem.

 What kinds of medical problems are there?

Answer:  An adverse prenatal diagnosis could include:

  • Heart defects
  • Genetic syndrome
  • Spina bifida
  • Sickle cell
  • Muscular dystrophy
  • Cystic fibrosis
  • Hydrocephalus
  • Kidneys are too small for gestation
  • Anencephaly
  • Down’s syndrome

 I feel devastated. How can I cope with this pain?

Answer:  It is normal to feel devastated.

  • Your dreams seem shattered.
  • You are overwhelmed with fears and questions.
  • Shocked and brokenhearted, you as parents wonder how you will survive the pain of this magnitude. 

 What are my choices?

  Answer:  Be informed.

  • Research the diagnosis.
  • Ask questions. Get a second opinion if you are not getting answers.
  • Seek the expertise of a specialist. A fetal defect can be detected by prenatal screening tests.
  • Take time to think about making a decision that can bring peace in the midst of emotional pain. 

 What kinds of medical advice can I expect?

  Answer: When a doctor tells you there are medical challenges with your unborn baby, you may be asked to choose between:

  • Terminating the pregnancy or
  • Continuing the pregnancy. 

Let’s look at considerations of both options. 

Abortion is routinely offered for: 

  • Fatal fetal anomalies (such as Anencephaly)
  • Disabling conditions (such as Down syndrome, Muscular Dystrophy or Cystic fibrosis)

The focus of preventive medicine in some cases has come to mean the preventing of some children with abnormalities from being born.  

How is the abortion option presented to parents?

 Answer: Medical professionals may use the phrase “Examining your options.”

  • Parents who would not otherwise consider abortion are asked to consider this choice.
  • Language that sounds compassionate may be used to describe termination.
    • The baby’s condition is incompatible with life.
    • Make a loving choice.
    • Have labor induced.
    • Prevent suffering.
  • Parents are frequently expected to quickly decide in a matter of days if you are choosing abortion.
  • Parents are frequently encouraged to abort even when a condition is not fatal.
  • A probable poor outcome seems equivalent to a death sentence.

What do parents do when a fetal defect is detected and they want to continue life for their baby?

 Answer: Parents need to be presented with information regarding carrying their baby to term.

  • They need hope, comfort and compassion when enduring this heartache.
  • Real peace comes from finding inner strength to make the right decision.
  • The diagnosis your baby has been given does not diminish a parent’s love for their baby.
  • When a fatal outcome is expected, medical professionals should give parents information on perinatal hospice services.
  • They can also connect them to other parents who have carried babies with life threatening medical conditions to term. 

Does a developmental disability diagnosis mean a lifetime of specialized care, love, and support?

 Answer:  Parents need information, resources, and strategies to raise and care for children with special needs.

  • Parents need to think one day at a time. Strength for each day comes as each day presents itself.
  • In order for parents to find their inner strength, their focus must remain on their child.
  • Family and friends who want to relieve exhausted parents may provide a system of respite care.
  • When a child with special needs is born into a family, parents try to find a balance whereby the needs of all their children are met.
  • There are organizations that can connect parents to other parents who have faced the same diagnosis and have also chosen not to terminate.
  • This networking of “family to family” support offers a positive response to a serious prenatal diagnosis.
  • One such organization is called CHASK (Christian Homes and Special Kids).

CHASK can:

  • Offer encouragement for parents and caregivers who care for children with special needs
  • Provide a source to listen to your concerns and answer your questions.
  • Offer the opportunity to talk to parents who have already experienced the challenges of parenting a special child.
  • Share honest and practical information and resources.

If you decide you cannot parent a child with special needs, you can consider making an adoption plan:

  • CHASK, chask.org, has families waiting to share their lives with a special needs child.
  • They can facilitate private adoptions in Christian homes.
  • Birthparents can have an active role choosing the parents that you entrust with the care of the child born to you.
  • Both choosing to parent and making an adoption plan are honorable choices.
  • Both parenting and adoption are loving, courageous choices made in the best interest of the child.
  • Any child given the gift of life will appreciate the sacrifices birthparents have made to give them a life of love, hopes and dreams.
  • If an adoption plan is made, your have given the child born to you the gift of a loving, forever family.

  What does having a child with special needs mean?

   Answer: You have given the gift of life to someone the world has    deemed  “not perfect.”  None of us are perfect.  We all have challenges.  

  • The gift of a child changes your life.
  • Love for children is not dependent on their IQ.
  • You learn to love your child for who they are.
  • You will grow to recognize your child’s unique abilities and gifts.
  • You will cherish the privilege of helping your child realize their full potential.
  • If your child has developmental disabilities, you will in time see them as perfect just the way they are.
  • You have instead chosen to focus not on defects or abnormalities, but rather on the opportunity to celebrate your child’s individual differences.

 

Resources:

Book by Madeline Nugent
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis – A comprehensive guide for parents given an adverse prenatal diagnosis
www.mychildmygift.com

For the Love of Angela
www.theobooks.org/product/for-the-love-of-angela-by-nancy-mayerwhittington-1039.cfm

Waiting For Eli
www.waitingforeli.com

 

Directory of perinatal hospice service

Providers nationwide
www.perinatalhospice.org

BeNotAfraid (peer support for carrying to term)
www.benotafraid.net

 

CHASK

www.chask.org
chaskinfo@aol.com
800-266-9837
208-267-6246