No one ever wants to hear the words, “there is something wrong with my baby.” Yet, you are probably reading this because you have been touched by someone who has said these words to you. If you are a family member or friend of someone who has been given an adverse diagnosis either before or after the birth of their child, you have come to the right place. Not only are the parents grieving, but you are as well. Sometimes we grieve from the unknowns, other times because the diagnosis seems so gloom, or still more so because a tiny infant has passed away. The pain can seem unbearable as you are filled with a mix of emotions. Know that you are not alone. There is a vast sea of people who have experienced similar situations. We hope by reading some stories, it will help you to heal or even just give you the peace you need to reach out to your loved one.

     
Jodia's Story
An Aunt's Perspective
  Nana's Story
A Grandmother's Perspective
     

Suggestions of things to say to a loved one who has received an adverse prenatal diagnosis…

• I am so sorry.
• I can not understand what you are going through, but am here for you.
• God will give you every grace you need.
• I will pray for you and your little one.
• Through God ALL things are possible.
• Go to our Blessed Mother. She knows your pain and will wrap you in her mantle.
• Name your baby, talk to your baby, and love your baby.
• Create wonderful memories of this special time while he is still alive and protected in your sacred womb.
• Remember that God can and does perform miracles. Don’t be afraid to ask, and don’t be afraid to hope.
• These special babies bring with them many spiritual gifts and grace.
• No matter how long your baby lives, he will be your child for all eternity.

Suggestions on what not to say, (things that may cause confusion and lead a women to end her pregnancy or things that may make her feel badly)….


• At least you are young. (Youth doesn’t take away the pain.)
• You can always have another. (No child can replace another.)
• At least you have other healthy children. (Although other children are a gift, it doesn’t take away the pain or knowing your child is not healthy.)
• Did you hear about so and so who had this and that happen. (Try not to minimize the pain, by bringing up someone who may appear to have a bigger cross.)
• If the child had a fatal condition, don’t try to make them feel better by saying how tough it would be to raise a child with special needs. The pregnant mother probably wants more than anything for her child to live, despite any disabilities.
• This is between you and God.
• Only you know what is best for you and your family.
• You need to keep your own health in mind.
• This has got to be hard on your body.
• What do you think is the right thing to do?
• This is a complicated matter.
• Follow your own conscience.
• I’m worried about your mental health.
• Listen to the doctors and do what you think your heart tells you to do.
• If your choice is made with love, it can’t be wrong.
• In this case, it is okay to say good-bye early.

Suggestions of things you can do to help celebrate the child’s life

• Don’t be afraid to mention the child’s name, before and after birth. Continue to mention the child’s name even if the child dies. Remember birthdays and anniversaries.
• Make specific offers to help the family out. Open ended offers such as, “let me know if there is anything I can do,” can be too much for someone who have received a devastating diagnosis to respond to.
• Offer to help out with the other children for doctor appointments etc.
• If the family has other children, offer to do something special with one or more. They are hurting too and could probably use some special attention.
• Offer to fill a specific task such as, assist with and send out birth announcements. Just offer to do the foot work that the mother may not be able to do before or after delivery.

• Offer to come with the mother to appointments if a support person isn’t able to come.
• Make something for the child. Some ideas of meaningful things that you can make, do, or buy are…
• a spiritual bouquet of prayers and sacrifices
• quilt
• hat
• picture frame
• blanket
• booties
• letter written to the child
• handprint molds
• footprint molds
• preemie or newborn outfit (most babies should be able to wear at least one outfit, even if born still)


Words of wisdom from mothers who have experienced an adverse diagnosis.…

Although society puts great value on health and beauty, those are not always God's greatest values. He often does the most good through those who are weak, poor and humble. Certainly our children with adverse diagnoses fall into the category of "blessed are the meek and the poor." We will someday find out what they accomplished on earth during their particular mission.

All of our children need our mothering and fathering in different ways. In the case of a sick child, or one who may not live long, there is great peace in knowing that you have done all you could do for that child, that you mothered or fathered him or her the absolute best that you could. For some, this will mean taking care of yourself during a pregnancy which you know your child won't survive; for others, it might mean allowing hospital staff to care for and feed your child and even allow surgeries. For others, it might mean keeping your child comfortable while he or she passes onto the Lord. But these are all forms of loving and parenting, and when we do our best for each child, there is great peace.

The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.