Thursday, April 2, 2009

The Big ultrasound (Spina Bifida Diagnosis)

Looking back at Week 18:

So we have felt "lucky" to have had multiple ultrasounds to see our little guys. The reason for the more frequent ones is due to the fact that they are sharing a placenta so they are at higher risk of not sharing so well, so they keep a closer eye for what is considered the higher risk time. Mark and I haven't complained, it has been giving us lots of chances to watch them develop and grow.

Week 18 was a well anticipated one, we were so anxious to find out the gender of our babies and to start planning things in our minds, and our home. We had had a couple scares before this, some bleeding that started at about 11 weeks but luckily stopped as suddenly as it started and some thyroid management issues of my own but other than that, the pregnancy has been pretty uneventful.

So the "big" ultrasound proved to be a "big" understatement. We had no idea how much that day would change our lives and literally pull the ground out from under us for a bit. We learned that one of our babies definitely looked like a boy (and assumed the other one obviously was as well) but they were spending way more time on the ultrasound than usual. You know when you start thinking "is everything ok?" and you get that "oh no" in your gut before you really know something is wrong, you just feel it? and then you try to say you're just being paranoid....but unfortunately we weren't. They discovered that day our "baby B" had Spina Bifida.

The doctor came in the room and went on to explain that this meant an area on the baby's spine did not form fully, which should happen very early, by the 28th day of pregnancy. For our baby, he says the spine was open at the top of the lumbar vertebrae, at L1, and most likely meant that he will be paralyzed from at least the waist down and would require surgery as soon as he was born. He went on to give us a lot of "possible" scenarios, all of them extremely negative and leading us to believe our child would have a poor quality of life and at the same time telling us the damage to his spine was already done, and there was nothing that could be done to improve his outcome. (they are doing experimental surgery in the womb currently for cases like this in several cities but we are not candidates since we are having twins.)

I STILL struggle talking about the "options" we were given over and over during this and subsequent appointments. We were told repeatedly that our son (now named Alex) would have a very poor quality of life but that we could always "try again." I only mention this because I've since learned how common this experience is. I had my faith to cling to and a husband who whole heartily felt the same way as me, but without these, I could see how someone could have chosen a different path, given all the "experts" predictions. My heart absolutely breaks just thinking of this. 

Needless to say we left that appointment in a state of shock, and overwhelming grief took hold of us for awhile. We needed the time to mourn for our sons losses, the challenges that would lay before him and wondered if we would find the strength to become the special parents that this child deserved. Selfishly, I hate to admit we even questioned how this would alter our own future plans and as awful as that feels to acknowledge, I've since learned this is all very normal.

During this time, I devoted every spare minute to researching more about Spina Bifida, and found several incredibly supportive sites of people who had already taken this journey, or like me were just beginning. There I was blessed with both a wealth of information AND support and I credit these sites and people (in addition to our amazing friends and family) to helping me get through a very difficult time. Sites like for spina bifida kids), and, and numerous links from there to personal blogs which ultimately has inspired me to write my own.

I have to also say during this time, I have done a lot of soul searching and praying and do have a strong faith. I believe that everything happens for a reason, even if we can't possibly understand it at the time. And this is certainly not any type of lesson I wanted Mark and I or my son to have to learn but that is out of our hands. I do believe that in the midst of our suffering, God has put special people in our lives. I have "met" and learned a great deal from reading others personal stories/blogs. I could turn to them any time day or night when I was struggling and it helped me to feel less alone.

It is in part why I felt compelled to write our own journey. Maybe it will be a sort of a lifeline for someone, the way others were for me. Its also helpful just to have an outlet, a "purpose" of some sort while we anxiously await for our boys to arrive. And lastly, I was unable to find many stories that included twins and I worry about how I will manage the needs of two babies at the same time, with one likely needing hospitalizations, numerous appointments, etc. I hope that as I stumble down this road, just maybe I will learn some things that I can pass on to others who are behind me.

A glimpse three years later: What I've learned now: The "experts" are only the "experts" at DIAGNOSING Spina Bifida. They are most assuredly NOT the experts at loving or raising a child with SB or even TREATING someone who already has SB. 

What they know is only from a textbook and too often an outdated one. No, raising a child with SB or any other disability is not a walk in the park. There are some extra worries, extra medical appointments, and many times some procedures, and equipment along the way. But the picture that was painted for us is soooooo drastically different than our reality and while there are no guarantees for any of us, From dozens of families I've talked to on line, our experience with SB is pretty typical.

Please feel free to message me if you've just learned of this diagnosis and want to know more from a Momma who is living day to day with this!!!!! I promise you while none of us would wish a diagnosis for our children, it is NOT the nightmare that is painted!

Just to illustrate that: here is a picture of my boys. You wouldn't know which one happens to have SB. They are both extremely happy and loving and absolute blessings in our life. Yes one of them happens to use "wheels" as he affectionately calls them to move around fast but otherwise they are so much more alike than they are different. 

1 comment:

The Beyers said...

reading this post brings me back to when we discovered that William (also baby "b") would have a brain abnormality. I felt exactly how you describe in this post, that was such an awful time!

I am glad that we met and I hope we can get to know each other better!!

Erin Beyers