Thursday, November 3, 2011

Beginning of the road!

Where do I start? Let me start with who I am and why I started this blog. I am a 28 year old mommy of one (soon to be two) and wife to an amazing and supportive husband.  When we had our daughter 3 1/2 years ago I had no idea what the world of parenthood and marriage had in store for us. As a family we have had our share of ups and downs and even some way downs, but always managed to find our way to being closer together. Thank goodness for those way downs because without them we would never be able to handle whats in store for us next. Only 5 weeks ago we were rushing off to the doctors to find out the sex of the baby, oh how excited we were! During the ultrasound we were having so much fun, joking with the tech and giggling about how the baby was boxing with my belly. She then announced that we were looking at a little baby BOY! YAY A BOY!! Eddie actually jumped out of the chair he was so excited! A few minutes later the tech got real quiet and kept measuring and looking closely. I began to get worried. The room got very quiet and then the words that came next turned the excitement in the room to an air of somberness. "I'm so sorry, I am seeing some things on the ultrasound that show me a birth defect.  I'm so sorry." Then she showed us out of the room and old us to head over to our OB's office. What the heck? That's it? Why are you so sorry? What is going on?! As we walked into the office waiting room the receptionist gave me a sad nod and told me to have a seat. (The ultrasound tech had called ahead). Then the nurse came and got me and put her arm around me and told me she was sorry and asked if I wanted some water or anything. "What the hell is going on!", I thought.  By the time the OB came into the room we were a mess, he then explained to us that our baby had what was called Spina Bifida a birth defect that affected the spine and swelling in the brain. He then asked us if we wanted to "terminate" the pregnancy? He wanted us to go talk to specialists in a few days. That was it. That was all the info we got?! 

For the next couple of days Google was not my friend! FYI, don't use Google for serious medical facts, you'll only scare yourself more!

Here comes the marathon doctor appt! Once at the Perinatologist (high risk pregnancy doc) we had another ultrasound done, met with the doctor, met with the genetic counselor and had a amnio done. About 4 hours later we left. With tons of info and even more questions. We then had appt scheduled with a neo-neurosurgeon and a child neurologist. All of these doctors again asked me if I wanted to terminate the pregnancy. By the last appt, I was getting a bit irritated with this question and barked back, "Am I missing something? I get that this is bad but please STOP ASKING ME!" This was my first hint that not everyone understands what being a mother is like.

So here we are 5 weeks later and ready for our Spina Bifida journey. I wanted to blog our road so that others going through this don't feel quiet as alone, and so that those who don't understand why we're doing this may understand. Plus, this is my selfish way of doing something cathartic. Having a way to get those feelings out, whether they be happy, sad, scared or alone. This future will be hard, but we have weathered some pretty difficult storms as a family and if we can do that we can do this! Thank goodness for my amazing and hardworking husband, my hysterical daughter, and my supportive family and friends! Bringing this beautiful little boy into the world will make anything worth it!


  1. Kristen I had no idea what you were going through. The journey you and your family will go through will be a long and hard one I'm sure, but you are strong and determined people who clearly, can get through a lot. It sounds so frustrating that they would keep asking about termination, but doctors don't always look at things from an emotional standpoint like a parent.
    Recently my friend went through a similar situation, finding out their son in utero had a major heart defect. He is now 1 years old, living with a pace maker, and is a "normal" 1 year old, who just has a large scar on his chest, and a couple of more surgeries ahead of him. I am a non-practicing Catholic, but I truly do believe that God does not give us more than we can handle. I will keep you all in my thoughts and prayers and hope you keep the strength up for your little guy :)

  2. Hi Kristin,

    My name is Chelsea. I was on the SBA facebook page today and ran across your blog to learn of your sons Spinabifida. I myself was born with it along with Hydrocephalus. It has it's ups and downs but I couldn't imagine my life any other way.

  3. Hi Kristin,

    my wife and I understand completly what your describing. We were asked so many times if we wanted to terminate, I wanted to terminate THEM. We found out at about 25 weeks or so. defect, lemon shaped brain, swelling..the whole nine yards. They told us she wouldnt survive. countless surgeries for feet, legs, bladder, bladder again..uteters..shunts..and here we are 14 years later. My daughter Grace is the most perfectly adapted teenager there is. she loves One direction, boys and she just started as Dartmouth first ever wheelchair bound varsity cheerleader. everything you write brings me back to those days when we wondered what sort of life she would have. Well, in her words "I rock"