Most pregnancies go smoothly and end with the birth of a healthy baby. However, there are all sorts of things that can and do go wrong during the development of an unborn baby.
Pregnancy and birth should be a joyful time. Moms expect their children to be born without defects. But tragically things can go wrong. Out of the blue, expecting parents can receive the news of an adverse diagnosis. Perhaps the baby has a chromosomal abnormality such as Down syndrome or Turner syndrome. Maybe the baby has a heart defect or has no kidneys. When a woman is excited about her pregnancy, finding out that something is wrong with her unborn child is devastating news.
Most women find out something might be wrong either during routine maternal blood work or during a routine ultrasound. If the blood work or ultrasound shows an abnormal result, the doctor may perform either a chorionic villus samplingor an amniocentesis to determine if there is a genetic abnormality.
After the doctor gets the results of the test, he or she shares the news with the expecting parents. If there is bad news about the baby, it is shocking and hard to hear. Women often have a period of grieving for their baby and for the loss of the dreams and plans they already have for their child. The defects can range from minor and easily correctable to severely disabling that will profoundly affect the ability of the child to learn and become independent. The diagnosis might even be considered terminal, meaning the baby will probably die before being born or shortly thereafter.
According to the Center for Disease Control (CDC), 1 in 33 babies (around 3%) in the U.S. are born with a birth defect. Another source states that 6% of infants worldwide are born with defects. So what does a woman do when she receives an adverse diagnosis?
First, it is important for her to slow down and take some time to think. Many women are counseled by their doctor to have an abortion. Some doctors offer to set up termination services right away in the same conversation as the diagnosis. This doesn’t give the woman an opportunity to let the news settle….to grieve and to research her baby’s condition. She needs time to know that she made the best decision and that she wasn’t pushed into something she didn’t want.
Her options are either to continue the pregnancy (parent or make an adoption plan) or to terminate the pregnancy. This is a terribly difficult choice for a mom who loves her unborn child. She doesn’t want her baby to suffer. She is afraid of the unknown and having a disabled child or maybe even seeing her little one die. Her heart is broken. Often people flood her with advice about what she should or shouldn’t do. She doesn’t need pressure or advice…she needs comfort, information, options, and hope. She needs to hear from others who have gone before her down this difficult path and have survived.
Many women don’t know that they can choose to continue their pregnancy. In fact, around 9 out of 10 babies with Down syndrome are aborted. There are many supports and resources available for a woman should she continue her pregnancy, including perinatal hospice for babies with a terminal diagnosis. There are about 150 perinatal hospice programs around the country, including one in Denver, Colorado, one in Boise, Idaho, and one in Billings, Montana. There are also programs in other states around Wyoming, including Nebraska and South Dakota.
Finding out your baby may be disabled can be frightening and overwhelming. Where do you even start? The National Dissemination Center for Children with Disabilities is a great site with information presented in a well organized and easy to read format. This site provides links to many others, including disease-specific resources and parent organizations. There are also many links to early intervention and state resources. Finding out you are not alone can be one of the most helpful resources. Read an article written by Patricia McGill Smith, a mom who has experienced raising a child with a disability. One of Patricia’s first recommendations is to seek out parents who have been through the same thing…they understand better than anyone else what you are going through. Here in Natrona County check out Arc of Natrona County for support and local resources. Many people can and do raise happy and healthy children diagnosed with birth defects. Often parents are surprised by the depth of joy and love these special children bring into their lives.
What to do for a terminal diagnosis
If your baby receives a terminal diagnosis, remember that there are resources available for you. It is important to take some time to slow down and grieve. Research the diagnosis so you understand what is going on with your baby. Find a support group of women going through the same thing and look into resources to help you.
Look at the option of perinatal hospice as mentioned above. Hospice is end-of-life healthcare focused on comfort care and dying with dignity. Most women don’t realize they have a hospice option for unborn children. This allows a mother to love and grieve for her baby and provide the best she can for as long as she can. The hospice workers will help a woman throughout the pregnancy to get the information she needs. They will be a positive support for her, walking a woman through a very difficult time in her life. Often they help to make a birth plan and arrange for keepsake momentos (pictures and footprints of the baby at birth). They help a woman to process her grief. They also help with funeral plans. They celebrate the special life of the baby however short it may be.
Receiving an adverse diagnosis does not make your baby any less of a valuable person for you and your family. As Patricia Smith wrote in her article, “This person is your child, first and foremost. Your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second.” The time you have with your child whether for a short time or a lifetime is precious. You can do this! There are people to support you.