When you have recently received some not so hopeful news about your pregnancy and your unborn child, nerves may have you on edge. Couple that with knowing you’re heading to consult with an unfamiliar maternal/fetal medicine specialist (who may be all the way across the country) who will be scanning you, reviewing your files and talking with you about possible treatment options, it is no surprise that you may be anxious or even more than a little scared. After all, this is completely new to you and your baby’s life is at stake. Here are a few points to help set your mind at ease and help you get through your first visit at a fetal center:
The Nurse Coordinator is your friend.
He or she will typically be your first point of contact with the fetal center, as they will have you complete any necessary paperwork for the appointment and will be in contact with your doctor to retrieve all files and ultrasound scans to that point. They will also likely be among the first to welcome you to the center and show you around. Trust their help and sincerity, as they are a wealth of knowledge and literally work with families just like yours every single day. They will be a great support for you as you journey through the rest of the pregnancy.
Prepare for more tests.
Even though you’ve likely had what feels like a hundred scans by now, the fetal center will require its own scans to ensure all diagnostics are clear and up to date. A few scans or tests you may undergo include a high-resolution fetal ultrasound, a fetal MRI or CT scan, amniocentesis, and chorionic villus sampling (CVS), among possible others. The good news is that you likely won’t be alone during any of the testing, as your spouse or significant other can be by your side for comfort and support. However, it is imperative that you leave other children at home (especially small ones) with a loved one, friend or neighbor. These tests can take some time and you do not want to be worried about or distracted by your child needing your attention when the doctors need to get through the testing in order to provide advice on a possible treatment plan.
There may be a whole team with whom you consult.
While you may have typically met with your obstetrician or gynecologist and an ultrasound technician at past appointments, you are about to experience the fetal medicine world on a whole new level. An entire team of multidisciplinary experts may be on board to consult with you about moving forward in treating the fetal syndrome and caring for your unborn baby. Some of these team members may include maternal/fetal medicine specialists, a fetal or pediatric surgeon, a genetic counselor, and a nurse coordinator. They will work together toward a comprehensive plan for treatment, ensuring you have all of the information necessary to make the best decision for your family.
Never be afraid to ask questions.
Chances are this whole situation is new to you and many of the terms used are foreign. If something is explained and you do not understand, it is in your best interest to speak up and ask for a better explanation or more clarification. You could literally be facing a life and death situation for your unborn child(ren) and you want to be the best advocate possible. The only way to do that is to have all the facts and information to move forward with proper care. Also, while it may seem scary meeting with all these experts, more often than not, they not only care for your baby, but also you. They are concerned for your well-being and it is important to really let them know how you feel on all levels. They will in most cases become surrogate parents to you while you are there. If you need someone to talk with, there are always counselors on staff to help you through the more difficult situations, or you can contact the Fetal Health Foundation via email at firstname.lastname@example.org or call 877-789-HOPE.
Things may move quickly.
Within 24-48 hours of your consultation at the fetal center, the team will likely discuss findings and the agreed upon treatment plan with your physician. Depending on the severity of your fetal syndrome, you may be scheduled for treatment in the form of surgery or otherwise as soon as later that same week. Just be sure to make arrangements for any children you may have at home, pack your belongings you’ll need while at the hospital or whatever may help you be comfortable during travel if travel is necessary. The most important thing at this point is to realize that you are in good hands. The experts will work together to provide the best care for you and your unborn child and will serve as an extended support network for the remainder of your pregnancy. Try to relax and let them do what they do best.
Contact us. We’ve been there, and we have hope.
Read stories of other families experiencing fetal syndrome diagnoses.