Two years ago, on a rainy October day, I had a routine twenty week ultrasound. We were told immediately following the ultrasound that we were expecting a boy. In the midst of our excitement, we were told that it appeared that our son had Congenital Diaphragmatic Hernia. They couldn't be certain so we were referred to a specialist. We were told that it couldn't wait to see a specialist and that it was pertinent to get in to see the specialist as soon as possible.
As one could imagine, my husband and I left the appointment confused. How was it that the excitement of expecting our first child, could be diminished so quickly by a diagnosis, that we weren't even certain was accurate? We sat in silence for most of the car ride home. I allowed myself to be happy that we were going to be having a little boy, and angrily told my husband I wouldn't go searching the internet for what that diagnosis meant, without a clear confirmation from a specialist. My husband took to the internet researching what this could mean for our baby. We didn't talk about it until the day of our appointment with the specialist. I guess one could call me stubborn.
Looking back to the day we first saw the specialist, I still hold onto my opinion that the set up and delivery of communication of the appointment felt so wrong. There I was, twenty one weeks pregnant, directed into a room with chairs. I wondered where the ultrasound machine or the Doctor was. I was faced with a Genetic Counselor, who asked us if we knew what Congenital Diaphragmatic Hernia (CDH) was. I laughed (not with disrespect but rather my sarcastic humor), and said "Well isn't that why we're here? So you can tell us if our son has that?"
Cue the somber tone, the cold feeling in the room and the multitude of ways to ask someone if they would like to continue with their pregnancy. How could someone even ask me that? I was upset, agitated, and mortified. Pregnancy hormones set in and I persisted we continue on with the appointment so we could see the specialist and confirm with another ultrasound.
CDH was confirmed. The specialist nicely told me my pregnancy was no longer in the hands of New Hampshire, and that all of my prenatal check ups would be in Boston. (That was later determined to be false, and I was followed by four different providers in two different states throughout the rest of my pregnancy).
I remember feeling lost, sad, scared, and ultimately guilty. Had I done something that caused this? I couldn't face doing research on the internet. I spent moments telling my close loved ones about my high-risk pregnancy, without even understanding what all of the testing and appointments meant. Telling others about what "could" be just didn't feel right to me. I was grateful to be pregnant, and more scared than I'd ever admit out loud.
I look back on the few months that I didn't have a clue what was going to happen, or what the future held. If I could take my experience and help change another expecting Mother's perspective, it would be this:
Hold onto more hope than you think is possible. Worrying yourself sick will not change the diagnosis. Be present. Remain as healthy as your mind and body will allow. Rest. It's okay to cry, and to feel scared. HAVE THE BABY SHOWER. I said it, HAVE THE BABY SHOWER. You and your baby enjoy those moments surrounded by loved ones. Don't let anyone ever persuade you to feel like you shouldn't take the chance of delivering your baby. Come what will, but you stay strong. Your moments of weakness, will undoubtedly continue to knock on your door. Let your heart do the work to wash away your moments of weakness. After all, you're strong enough to be carrying a tiny human. From a Mother who has been asked if I wanted to abort my pregnancy, if I wanted to not have a baby shower, and to answer the questions I didn't have the answers to myself...
This too shall pass.
Proud Founder and Owner of My Hero Calls me Mama
A very special thank you to the Advanced Fetal Care Center for following me prenatally. Thank you Donna and Dr. W for providing me with HOPE in my heart at every visit. I may be biased, but we were fortunate to be in the absolute best hands in the world, with a promise of "no rookie mistakes".
She is truly a wonderful and amazing Mom right from the start. Your husband is such a great Dad. Your son is the best little warrior ever. Thank you for sharing your story.