Nothing prepares you for the news of a fetal syndrome diagnosis. It is as if your child is drowning, but you are unable to jump in and try and save them. This is a very frightening time with many challenges ahead. You may feel lost, confused, angry, sad, and often hopeless. To ensure you can best handle most aspects of a diagnosis, it is best to have a plan in place. While you may feel alone, the Fetal Health Foundation is with you every step of the way. Following, we provide to you the necessary things you should ask when diagnosed.
1. You will be the #1 advocate for your baby(ies) – We rely a lot on our medical professionals to guide us and have all the answers. Truth is, when you deal with fetal syndromes (many are very rare), our medical professionals may not have all the answers. You are now the main advocate and need to be part of the “team” in deciding what is best for your babies. That means learning as much as you can about the syndrome. Don’t be afraid to ask questions. No question is silly.
2. Learn as much as you can about the diagnosis – Likely when you first were given the diagnosis, you absorbed about 50% of what the doctors told you. Find reputable resources like the Fetal Health Foundation, and reach out to learn as much as you can about the syndrome. Be careful, as there is a lot of misinformation and non-credible sources. It can be hard to tell the difference, so be sure to start out with credible sites such as those of the Fetal Health Foundation, NIH, WebMD, CDC, etc. These sources can be helpful in gaining a better understanding of what you are facing, what treatments are available, and where those treatments are being performed. It is important that wherever you get your information (again be careful that they are credible sources), that it is easily understood. It should be easy to understand and should explain to you any clinical terminology. It is also important to understand that while support groups can be very helpful, they cannot offer advice provided by trained medical professionals.
3. Build a support network – Our first instinct is to turn to our families for support. Likely your spouse is hurting, too and while you do need to be there for each other, you will need some outside support, as well.
Read more of Lonnie’s tips here…