Not For the Faint of Heart, part 1 of 2

On Thursday, August 5th, 2004, we made our appointment for the following day to induce labor. My understanding was that this could take anywhere from 12 to 36 hours. This was so overwhelming; I felt like someone had jammed their arm down my throat and clenched my stomach in their fist. DH was the same - devastated. And on top of all of this, we had to put on the face at work that all was fine. Nothing to see here, move right along, now. I managed to keep my wits about me enough to call my OB's office and make sure they got pre-authorization for the hospital visit. In fact, the receptionist at the doctor's office was surprised I thought of it. Hey, as a virgo, we're nothing if not practical.
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The rest of this post may be a bit graphic and sensitive for some of those reading. If you have an aversion to needles or are nauseated, or are currently pregnant, you should bypass the rest of this post. I realize that that will greatly reduce the number of my audience, but as this blog is a figurative exercise in therapy, I don't mind. I will be happy to alert you, dear reader, when the water is fine. The next paragraphs will be the hardest words I have ever typed.
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One other thing I remembered was a clause in our IVF financing: our contract would end with a live birth. This was financing we purchased (for $21,600.00) prior to beginning our cycles - for this discounted rate, we would receive 3 fresh and 3 frozen cycles. (PGD, ISCI, AH were not covered by this sum, and would have to be paid in full prior to each cycle start date. Thankfully, DH & I have good credit and a number of credit cards). If you're successful on the first try, you've over paid but are deliriously happy having had the child of your dreams. If all cycles fail, one may take comfort in the fact that less money was spent per cycle than if you paid for each cycle individually. So far, we had been through one cycle when we accidentally became pregnant with Ben.

My (practical) concern was that when labor was induced, and Ben was born alive, that would render our contract null and void - we wouldn't get another chance to go through IVF to have an unaffected child. I e-mailed my OB to run this by him, and he replied that, yes, it is a possibility that the baby may be alive for a few minutes after birth. So we scheduled a potassium injection for first thing Friday morning. This means that through ultrasound guidance, they would insert a needle though my belly, into Ben, into his heart and inject the potassium. This would stop his heart from beating, causing fetal death. So this is how practical I had to be. I had to kill my affected 17 week little boy for the "greater good" and possibility (and hope) of one day having a child free of this accursed disease. I'm a mess as I'm typing this. This was the worst thing I've ever done, ever had to do. The only rationale I could cling to was that if we had Ben, one day he would start to display his symptoms. It would get progressively worse and we would watch our son die, painfully wasting away. In that position, I would do ANYTHING to prevent it - to take it back - to keep him from suffering. And that's what I was doing on August 6th.

The doctor and nurses performing the termination were sensitive and sympathetic. I'm sure they hated to do this as much as I hated having it done. DH was with me the entire time. I insisted on watching, DH could not but held my hand and cried. I'm glad he didn't. I felt that if I were taking Ben's life so early, it was certainly the least I could do watch. I watched and I cried, and I vowed that none of my children (if I would be blessed enough to have them), would EVER have to go though this. I refused to pass this goddamned gene on. It would die with me. I watched my son die and swore to him that I would never make him or any child suffer. Not from this, not from ALD. If we could prevent it, by any means necessary we would. As God as my witness, I swore.