I feel compelled to write this to help everyone understand what is going on right now. Yesterday was literally the worst day of mine and Aaron’s lives. It started off pretty awesome; we dropped Aaden off to his favorite cousin’s house and headed to our first official ultrasound at the dr’s office. Never in a million years would I have thought our entire path in this life would change in such an instant.
We spent most of our time in the waiting room laughing and twiddling our thumbs like people do in waiting rooms but they got us back abnormally fast for the ultrasound. I remember thinking that this particular ultrasound tech was extremely quiet and I almost came to the conclusion that she was plain rude and had no bedside manner. She just kept saying she couldn’t get us a picture of his face so she pointed out his feet and his gender and carried on with the measurements and so forth; still very quiet. We had tons of ultrasounds when we were pregnant with Aaden and the techs were always willing to show us what they were looking at and explain what they were doing; she wasn’t doing any of that. She wrapped up her scan and told us to go wait in the waiting room to be called into a room. I guess she could see me looking at the 2 pictures she had printed and I must have had a look on my face that said, “do I get to have those”, and she quickly said she’d put them in my file and Dr. Sherman could give them to me (also found this very odd). When Aaron and I got into the exam room we even said that we both kind of felt as though she didn’t know what she was doing, we soon found out what her silence meant.
When Dr. Sherman walked in the room I knew something was wrong, she wasn’t her normal chipper self at all and my heart began to sink. We barely got out, “just fine, how are you” before she let out a deep breath and said how concerned she was about the images she had seen from our ultrasound. At first I was thinking to myself he was going to be downs syndrome, which I was totally ok with but she kept using the word anomaly; that stupid word kept coming out of her mouth and I didn’t really know what it meant. Then came the big word, anencephaly; which I had heard of but in that moment I couldn’t make my brain remember what in the world it meant. Aaron was already bent over in tears and I must have looked like the most heartless mother alive because I just kept saying “uh huh uh huh” with no expression on my face. I sat and listened to everything she said and I don’t think I was breathing at all because I remember having to tell myself to breathe. I couldn’t move, not even my arms, I felt paralyzed. Maybe I didn’t want to move because that would assure me that I was, in fact wide-awake and this was very real. I do remember looking at her and asking what all this meant and she just explained that all of this meant that our baby would not be able to survive once he’s born. She began to tell us our options, which consisted of termination (a nice word for abortion), the baby dying in the womb or carrying him full term only to deliver a living baby that will die in our arms. This is when the tears started and I couldn’t make them stop. Any of you that know me well know that I’m not one to cry in front of people; I think by nature I fought it off as long as humanly possible. Dr. Sherman is the sweetest woman alive, she just said she would give us a minute and she’d come back. When she came back in she squeezed me so tight, as if we were life long friends and I will never forget that. We could both tell that it killed her to have to deliver this news to us and Aaron kept apologizing to her for having to tell us that our baby was going to die. When I expressed to her that we don’t believe in abortion she was very pleased to hear that but did voice her concerns about me having to carry him full term. She explained that he will continue to grow, he will continue to move inside of me, it will feel just like a healthy and normal pregnancy but the end result was going to be fatal. The one thing she said that brought a tiny bit of peace over me was that if he did make it full term and was delivered alive that his organs are all developed to the point of being available for organ donation. I almost felt empowered by that; the most helpless feeling in the world was being lifted by the fact that I could turn my tragedy into someone else’s happiness. As all the emotions started flooding over me from that moment yesterday morning into the evening, I lost that sense of feeling empowered and became angry, hurt, sad, resentful, sick and selfish. I kept thinking why does my baby have to die? We’re great parents, we love our children, we are constantly looking for ways to make their lives fun and meaningful, they’re always fed, always clean, they know they’re loved because we show them and say it a million times a day so why can’t I have my baby?! I see children daily at my job that have terrible parents and many of them aren’t raised by their parents at all, someone else has the burden of raising them; I can’t help but think why did their mom get to have a healthy baby and I have to endure 5 more months of feeling my baby move inside of me just to watch him die. I think all these thoughts are only natural but certainly not right. I don’t wish this on anyone, no matter how bad of a parent they are, nobody should have to go through this.
This morning we visited a specialist that, I’m sure has some fancy name, but he basically does higher level ultrasounds to confirm what has been seen in the ob’s office. We went in stronger than we had felt last night but still very sad and heartbroken. I think somewhere inside of us we were hoping that tech didn’t know what she was doing after all and what she saw wasn’t what they told us, but we both knew otherwise. Dr. Reiter is a very smart and factual man, not much emotion and I think that’s what we both needed today. He confirmed that what they found yesterday was in fact the correct diagnosis of anencephaly. We both started to cry as if we didn’t know that was coming but each time it’s said it’s like the wound is reopened. The hardest part is watching the ultrasound and seeing him move just like any other baby does, he wiggles, he rolls, he punches, he kicks and his heart beats a healthy 142 beats per minute; but he pointed out the affected area and my baby does not have a skull and his brain has ceased to completely form. That is so hard to accept. On top of all of this they can’t tell us why this happens, they say it’s nothing that we did wrong, it’s not linked to genetics and it’s not something that can be corrected no matter how early it’s detected. The health risks that seem to be linked to a child that is born this way are all health issues I do not have so they’re answer to me was, “it’s just bad luck”. Hhhmmmm….bad luck?!? He did put our minds at ease about the possibilities of us having another child cursed with this by saying our chances only rise by 1%; which is way better than we were thinking. As I said before, this Dr is very medical and factual, not emotional, so he made a very good argument for termination but I still cannot walk into an abortion clinic in Houston and request that someone kill my baby. Now is the time to make huge decisions. Since we know that we cannot terminate it looks like I will be carrying this baby to full term if that’s what God wants to happen. I’ve decided to refer to myself as a surrogate mother; instead of this being my baby he is God’s baby and his purpose in this life will be shown to me at some point along this long path. As Dr. Sherman pointed out yesterday, the life he has inside of me is the only life my baby will have; therefore I will provide the best possible life for him from here on out until the time comes for him to be delivered and then to pass away. Dr. Reiter pointed out today that it’s very rare for transplants to be performed on newborns because it has to line up just right, one infant is born needing the organs that a dying infant has to offer. My prayer from here on out is that God will align that for me and for some other mommy that has the opportunity to watch her baby grow up. I think some people wonder how I can be so at peace about giving my child’s organs away but I just see it as him living a full life through another little person so it brings me more peace than anything else could at this point.
I am so thankful for the family and friends I have! I am so appreciative of the prayers that I can feel being prayed for our family! Please continue to pray, as the next 20 weeks will be brutally hard on all of us. I am dreading it but trying to find ways to get through it. Part of me wishes we hadn’t found this out so soon because the part of knowing what’s in store makes it that much harder. I wanted to let everyone know what was going on so that you weren’t confused about it all. I appreciate you taking the time to read this, I know I get long winded but there’s so much on my heart and this little letter barely touches on it. I am proud to say that I am a Christian and I know that God has a plan but please know that knowing that God has a plan does not make this any easier on us as parents to mourn the loss of our sweet baby that we’ve already grown to love so much. Our sweet baby boy has grandparents in heaven waiting to play with him so I know his life after this one will be a wonderful one in heaven with Jesus and his grandparents.