Dealing with Congenital Defects and Illnesses During Pregnancy

Pregnancy is usually a time of joyful anticipation. But when ultrasounds or other prenatal tests detect a possible congenital defect or illness, joyful anticipation can turn to fear and worry. This article will walk you through the difficult process of dealing with congenital conditions during your pregnancy.

First Things First

If you are reading this because you have found out that your unborn child or grandchild may have a birth defect or serious illness, the first thing you should do is talk about it. Discuss it with your spouse, your children, your parent, your best friend, your pastor, your priest, your rabbi, God...anyone you love is probably hurting with you and will appreciate the chance to cry it out with you.

Now is not the time to hold back your emotions. It is natural to feel shocked and dismayed. Anger and guilt (although many defects and illnesses aren't caused by anything the parents have or haven't done) are also common. But the strongest, most painful emotion you will probably experience is fear. It is important that you work through these issues with your loved ones before you make any decisions regarding your pregnancy.

Educate Yourself

The second thing on your to-do list should be to educate yourself on your child's condition. If you already have a pediatrician, ask about their experiences with children born with the problem your child may have. If you don't have a pediatrician, look in your local yellow pages and call around for information. Most pediatricians are pediatricians because they truly care about children, and they can be a wonderful encouragement when you're expecting a sick baby.

Use Internet search engines to research the condition. Pay attention not only to the medical sites, but also to personal pages and email groups. When I was investigating my child's defect, the outlook on most medical websites was grim. Babies born with this defect were said to have only a 50/50 chance of survival at birth and usually have associated defects. When the doctors said my baby had less than a 10% chance at survival, I worked myself up into a panic until I stumbled upon some personal stories of healthy, surviving children whose parents had heard the exact same prognosis.

If you are anything like me, you will find yourself with stack upon stack of articles, references and contact information. Organize them into folders if necessary and plan on referring to them often during the decision-making process. It is important that you are calm, rational and informed during this stage. Of course, you can't turn off your emotions; neither should you let them lead you to a hasty decision you may later regret.

Choices

Some parents make the decision to end the pregnancy based on the belief that the child definitely will die due to the severity of the defect or illness. This is an option that obstetricians may urge parents to choose, feeling that it is kinder than proceeding with the entire pregnancy only to lose the baby after birth. However, parents should keep in mind the fact that obstetricians do not specialize in caring for babies. They are experienced in dealing with women and childbirth, not special needs children. In order to get a realistic idea of just what you are going to be dealing with, you must first consult the proper medical authorities.

Your nearest Children's Hospital can be a wonderful resource. If your doctor's office hasn't yet put you in contact with one, ask them to. If necessary, find one yourself. Make an appointment with the pediatric surgeons and specialists who deal with children with the illness you are facing. If possible, tour the Neonatal Intensive Care Unit and speak to the nurses, whose daily hands-on interaction with sick babies make them a valuable resource in helping you make an informed decision.

Preparing for the Worst

Sadly, while researching my own child's defect, I also found many references to babies and children who had lost their fight for life. This woke me up to the hard reality that if my child were to die, my husband and I would have to deal with funeral arrangements. One mother I spoke with whose daughter died at birth regrets not being better prepared for the practicalities and advises expectant parents to make tenative plans before the due date. Simply writing down your wishes to refer to later if necessary would be helpful in ensuring you get the closure you need in the event of your child's death.

Ask about your hospital's support system. Do they have support groups and social workers available? Get in contact now with all the people who may be of help once your baby is born. A social worker will help you prepare for and cope with any red tape, including medical insurance issues, in the event of an extended hospital stay or death.

Hoping for the Best

Unable to see into our baby's future, my husband and I let ourselves imagine one during those bleak days, and doing so gave us the strength to hold onto hope. She was born right on time; red, crying, and tiny, weighing it at only 3 lbs. 9 oz. After two surgical repairs and a long stint on an ECMO machine at the University of Michigan in Ann Arbor, she emerged with a few scars and a whole lot of spunk. Today she is a smart, healthy six year old with no lingering ill effects from her ordeal.

Unfortunately, not all pregnancy scares have happy endings like ours. Don't be afraid to reach out for help from your friends, family and community during the difficult times. Above all, cherish the time you have with your baby.