I’m surviving...TFMR

It’s been 68 days since I was forced with the decision of saying good bye to my precious baby boy. He was our first baby. My husband and I are both in our early 30s so we were not considered high risk, we fell pregnant the first month of TTC. We waited 13 weeks before announcing to the family, 14 weeks to my work, 15 weeks on social media. Everything felt smooth sailing. We went into every scan with no concerns, no issues. Healthy looking baby with all the proper limbs, HB was strong, never had any spotting, all good signs. We even took additional tests for common anomalies- spinal bifida, muscular atrophy, Down syndrome - all came back clear.

On our 20 week anatomy scan, we were excited to find out the gender and the technician was nice and joked with us, she took a lot of images. We didn’t feel concerned at all. After 40 minutes, she left the room. She came back after 10 minutes saying she was trying to locate the doctor. Still no concerns at this point but my husband said he was worried. He said he saw her google something. I said, don’t worry. Nothing is wrong. They’re just getting the doctor to make sure she did it properly. After another 5 minutes, the doctor comes in, greets us and starts taking images again. Now, we were dead silent unsure of what was going on. I wanted to ask, is there something to be concerned about? But decided not to. Finally, she turns to us and asks if we were comfortable. I was as comfortable as I could be, half naked but now so anxious to know what she was going to say.

She starts with, “I am so sorry.” From that moment, my heart sank. “I’m 90% sure your baby has a condition called, Dandy-Walker Malformation. It’s missing a piece of the cerebellum.” We are just staring at her blankly because up until this point we never in a million years could have guessed our perfectly formed baby was missing an internal piece in his brain. She explained with this condition, babies don’t live past birth and if they do, it would have a difficult life having a shunt inside the brain to direct excess fluid out of the brain. Babies also have malformed heads and have an IQ of 80 and would have coordination and speech issues. I sat, tears swelling, body completely life less, I couldn’t comprehend what she was saying to me. My husband kept holding me and saying, I’m so sorry, I’m so sorry. The doctor explained next steps, would be additional tests and options. I waited to hear that he would be fine but she didn’t say it. She just kept saying sorry. That they don’t know what causes it and it happens to 1 in 2500 babies. It could be a fluke since we were not high risk or had anything that would raise a concern. The last thing I asked before we left was, do you know if it’s a boy or a girl? She said, “boy.” We left that day without our heart. The week continued and we did additional tests, met with pediatric neurologists, and the diagnosis did not seem hopeful. We didn’t do the amino because i caught a bad cold and kept sporadically coughing.

After a week of the diagnosis, all the google search, taking a number of tests with no hopeful outcome, we had to make the terrible, heart-wrenching decision to say goodbye to my 21 week old (5 months) baby boy on April 30th,2018. I wanted to share this story because I want people to know of him and that he existed. He was so loved and very much wanted, we could not bare to bring him into this world just to suffer and be in pain.

Thank you for reading, I hope that no one else has to ever make such a decision as a parent.

To anyone who is going through this now, I’m here to talk if you need. And to those of you who have, please share your strength and guidance.

I’m surviving.. each day is a new day but I’m no longer myself anymore and will be forever changed.💔💙💔