Thanks for starting this! I am currently estimating that I am 4w1d, or 15DPO. Got my first BFP at 9DPO, and it’s gotten darker, thankfully.
We found out we were pregnant in August 2013, with our first LO due to arrive on April 24. First trimester was rough– I lost 20lbs due to “morning” sickness, slept around 12 hours a day, and was just generally worthless. Every OB visit was good though– we had 3 u/s early on and every time, our little bean was growing and bouncing around! I always had a sneaking feeling that something was wrong– I can’t explain it, but I just felt like we shouldn’t be too excited or attached.
We elected for the sequential screening to tell us if our baby had any abnormalities (trisomy, downs, NT defects). The first half of the testing was done at 13w and everything was perfect. We had an early gender scan at 17w on a Friday (it was a GIRL!) and the second half of the testing. We celebrated our first anniversary that weekend as well. Monday morning, my OB called me at work to say that my test showed extremely high levels of spinal fluid in my blood draw, indicating a possible NT defect. She scheduled me for a visit with an high risk OB and level II u/s the next morning. I instantly knew we were not going to be one of the lucky false positives– this is what my intuition had been trying to tell me.
The initial level II revealed spina bifida. It was too early to tell about other associated factors. We were immediately given the opportunity to terminate the pregnancy, of which we declined for favor of waiting until the baby grew a little bit. Spina bifida can range from tolerable to life-threatening– we didn’t want to make any decisions until we knew how severe.
Commence the most wrenching 3 weeks of our lives. We had a second opinion 3 weeks later, and a follow up with an MRI and another level II u/s. Unfortunately, the news was worse. Confirmed was the most severe type of spina bifida, extremely high on the spine (the higher the break, the less the function and worse prognosis), a missing cerebellum and hydrocephaly. No one would say with certainty that our little girl would live to term, make it through birth, or even a few days past. If she did live, she would need several surgeries in her first months, many over her lifetime, would never walk or talk and would need lifelong care. In short, no quality of life, if she lived at all.
We struggled. I never imagined being in this position. We couldn’t fathom making our little girl suffer, but also couldn’t fathom letting her go– we so badly wanted this baby, and had waited until we had our lives together to TTC. It was such a cruel thing, feeling her move around and knowing that she would never get to do that free of my body’s support.
We decided to end the pregnancy after meeting with a neonatologist who gave us a grim perspective– out of the 2 other children she had seen be born with similar cases, one had passed within hours of birth, and the other died on the operating table. We knew we could not be responsible for making our girl suffer for any reason, and felt that our suffering in her loss was more tolerable than watching her struggle and die.
I had a D&E at 21w. It was the worst day of my life. I contemplated running away the night before. I considered killing myself. It was too much to handle– we had gone from the happiest moments of our lives to the worst in the course of a month. We said goodbye to sweet Ellie Hope that day, but I think about her almost every moment, still.
At my follow-up in January, the doctor advised that we wait two cycles before TTC. I was also required to take high dose folic acid, which is key in preventing NT defects. We waited through my January and February cycles, and began TTC again in early March, per my temp charting and OPKs. First time was a charm again, and I got a BFP at 9DPO!
I am simultaneously thrilled and terrified. I don’t so much fear a miscarriage, but I do fear another fatal defect. I won’t consider us out of the woods until we get a clear sequential screen back around 17-18w. We are keeping this pregnancy a secret as long as we can, this time. Right now, only my husband and BFF know, besides the bees here! I am hopeful for a healthy baby, but also cautious… I’m tempering my excitement and trying not to get carried away, I guess as a defense mechanism. It sucks– I feel a bit robbed of my pregnancy because I won’t really be comfortable celebrating until well into the second tri.