08/28/2007 06:29am by AmyWhere do I begin? Our family received some devastating news last week and I need to write about it and put it out there. I'm hoping this will be therapeutic for me.
For a while now, I have been telling everyone I know that we were having an ultrasound on Thursday, August 23rd (at 20 weeks gestation) and I was going to find out the sex of my baby. I just thought that was so important and couldn't wait. I was having a pretty uneventful pregnancy so far, no complications, and feeling great. And in my mind, finding out the gender of the baby was the point of this routine ultrasound. So, Mike and Alex joined me at the doctor's office for this event. Even though I knew there was a possibility they could not determine the gender (based on how the baby was positioned or movement), I was still hopeful and happy to see pictures of the Baby for the first time.
We had the ultrasound. B was moving like crazy...doing gymnastics in my belly. I got slightly teary eyed with joy about seeing B for the first time. The technician commented how active B was. She also said she hoped we didn't want to find out the sex because she couldn't tell from all of the movement. I can't deny it, I was bummed. I had my heart set on finding out.
The three of us then waited in the doctor's office. I was supposed to meet with the male doctor in the practice for the first time this visit. We had been waiting quite a while and Mike and I discussed him just going back to work...the important part was over with and he really didn't need to be there any longer, but he stayed. The female doctor, Dr. Knutson, that I had seen the last few visits ended up coming in. She said the other doctor was busy and she was doing paperwork so she thought she'd do my appointment. And then she was stalling/hesitating as she was looking at my chart. I seriously thought she wasn't sure how to approach me about how much weight I gained this past month! I thought I was about to get scolded!
But then she said, "I don't know how to tell you this. Something is wrong with your baby." It was a complete shock...this came out of nowhere for us. And, of course, I started crying. She said B has anencephaly, which is a very rare neural tube defect. Basically when the neural tube develops around week 4 of pregnancy, it does not close off the way it's supposed to and B's top of the head/brain does not develop and that this is terminal. The baby will be stillborn or pass away usually fairly quickly after delivery. HELLO?!!! Are you freakin' kidding me????? I was a wreck, to say the least. She comforted me and told me she knows this is so hard to believe because everything had been going so well. She stressed that there was NOTHING I could have done and there really is no known reason....combination of genetic/environmental factors, considered a multifactorial etiology, but they truly don't know what causes it.
She said I have two options: carry B full term or as long as possible and go through labor/delivery for it to be stillborn or die a short time later OR terminate the pregnancy. I was in such a state of shock and denial that the first option just made me completely sick and how could I possibly go through 9 months of pregnancy and that process only to have the inevitable happen??? It sounded awful. And I said no, I'd have to terminate the pregnancy, not really knowing what that fully meant, and she understood. I was set up for a "second opinion" with a high risk OB specialist in Indy for Friday morning. This appointment was not because the diagnosis was questionable, or anything, it was for this doctor to measure B and see if a doctor in the Indy area would terminate the pregnancy this far along.
So, needless to say, the rest of Thursday was completely awful. My mom got off of work and came down to be with us. I couldn't sleep that night. She watched Alex for us on Friday. The ultrasound in Indy was very short. I couldn't look at the screen and the doctor commented on this. The diagnosis was confirmed and then we met with the doctor to discuss our options...although I had thought I decided and didn't feel I had an option at the time. She said I didn't have to decide today and I'm like, uh, yeah I do. Because any clinics we looked at online (which were all out of state since it appeared no one in Indiana would terminate at this stage) would have to terminate soon. And I thought it would be better for my mental and emotional health the sooner I got this "taken care of," so to speak.
So, she gave us her recommendation of where we could go (Dayton, Ohio) and we were on our way back home. I went through another awful day...calling some of my Christian friends and asking what they would do, not ready to hear myself that answer that they were about to say, so I had to hang up. I was extremely uneasy about our decision, but thought it was the best way for us, long-term. I talked off and on to the grief counselor from Indy, who REALLY helped me work through this. She kept telling me to SLOW DOWN, that I'm moving too fast. I didn't take that advice until Saturday. We called the clinic in Dayton and scheduled the 3-DAY procedure for Tuesday (today!). Once again, I couldn't sleep Friday night. I had a terrible headache for 2 days from all of the crying and just way too many thoughts racing through my head.
Saturday morning, my mom went back home thinking we had a plan in place that was best for me. And then I finally SLOWED DOWN and started thinking what this meant for us long-term, not to mention I looked up online about the procedure I was going to have done and it sounded totally awful and not something I could live with. I had to find a Bible, had to find a Bible. My friend, Kristy, told me a long time ago that if you're struggling with a decision or need an answer, just open up the Bible and read the first verse you see. So, I felt the urgency to do that and I did....and it gave me the answer I needed. I read a verse that basically said the Lord has never failed me and will not fail me now. If I go against His covenant, I will regret it and pay for it. It was a harsh verse, let me tell you. But it was what I needed to hear once I really sat and listened to my heart and God, opened my eyes, and SLOWED DOWN.
So, Mike and I really talked this through and we were both on the same page. We don't want this guilt or to wonder WHAT IF?! Termination of pregnancy/an ugly abortion of a 20-week fetus/a part of us, people!, did not set well with our souls. This is an EXTREMELY personal decision and no one knows what they would truly end up doing unless they were in our position. But, we couldn't live with ourselves and we really think terminating would have affected us SO much more in the long run, and it would affect our relationship more, and that we wouldn't be able to truly move on from it. So, continuing the pregnancy was, in the end, the only option for US. And we haven't looked back or doubted our decision since. We are at peace with it. Don't get me wrong, I have had emotional moments since then and this is NOT going to be easy, by any means. Telling someone our situation for the first time is heart-wrenching. Thinking about how I'm going to deal with B growing and the movement is tough. By the way, I felt a lot of movement for the first time Saturday night. B is a part of me and a part of our family. And we are going to love B as long as we can...any time we have with B in the womb or in our arms is precious and is a gift from God. And we feel most comfortable with going about this the natural way, that God will decide when it is time for B to be with Him.
So, we know WHAT we need to do, now HOW the heck are we going to do this??? I truly don't know, but I think we're off to a good start. I have joined an online support group for women who have experienced this exact thing and carried the baby as long as they could. I have talked with my doctor and she supports me 100% and she and her staff will work with us with grace and compassion. We have talked to a lot of family and friends who support us and love us and realize this is the only way for us to enjoy B as long as we can and then mourn and grieve the way we need to. We have met with our pastor and will continue to, which will be so helpful for us. We actually went to church on Sunday, which I contemplated for a long time, but determined it was where I needed to be and it was beautiful. We will seek out additional grief counseling and talk with someone about how to best handle this with Alex, precious Alex who will be 3 in October and who I love even more now than before, which I didn't think was possible.
So everyone, what I need from you is your prayers that....
......we will get through this in the best way possible and get out of this what we need
...... we will cherish B as long as we can and honor/mourn B properly
...... Mike and I will keep communicating and expressing our feelings no matter what those feelings are
at the time
......we will get the support, love, and help that we so desperately need
......we will be present parents to Alex and enjoy every moment with him
......we will talk with him and deal with him in the best way and that he is even more compassionate and
loving because of this experience
We appreciate any and all prayers. Thank you for listening. This was good for me to share and vent! We love you all!! And Praise God!
Links about anencephaly: