Yesterday and today, I am stuck in the what-ifs. You see, I was on Facebook in one of my support groups, and I found another complete heart block mom. We are super rare, so it’s crazy that I found someone else going through the same difficulties that I did.
She found out her little girl had complete heart block and hydrops in week 24, whereas our heart block was diagnosed at week 18 with hydrops at 25 weeks. The doctors told her she had to make it as far as possible, as did mine. She made it for 5 more weeks – same as me. At 29 weeks, she developed mirror syndrome and had to have an emergency c-section. I was admitted to the hospital at 30 weeks to monitor me and try some drugs as a last-ditch effort, and Jonah died 2 days later.
Her daughter’s heart rate was in the 40s, as was Jonah’s. They told me that delivering him that early would mean he didn’t have a chance, because they may not be able to get a temporary pacemaker into his tiny vessels, and through all the extra fluid on his body. This little girl is still alive, 2.5 weeks after being delivered, with a temporary pacemaker. She’s on a ventilator and still isn’t in good condition, but she has a chance to fight.
Reading this really plunged me into the whole experience all over again, and made me angry that we didn’t give Jonah a chance to fight outside of my body. What if we had tried? What if we delivered him and gave him a chance? Our doctors said it was possible he’d never take a breath, but that doesn’t mean I’m not wondering what if.
What if we tried to deliver him at 29 weeks? Is it better that he didn’t suffer and died peacefully in his safe space? What would he have looked like when he was alive, or just not delivered already gone?
This is heavy stuff, and it’s hard to think about. It’s hard to be stuck here in what-if land, and it’s not a place I want to be staying for a long time. I do find peace in knowing that he didn’t go through the shock of being brought into the world, only to feel pain. I’m trying to hold onto that thought, along with the intense love I feel for him, to make it through these what-ifs soon <3