The diagnosis

I was pregnant with my first baby. The day had finally come for the targeted ultrasound. The doctor had told us about the 3d images and we were excited to get a glimpse to see what our son would look like, whose nose would he have, would he look familiar or at this stage to babies look like aliens. So many questions but mostly just excitement! This was one of the few appointments my husband could make it to and we were excited to be able to go together and check up on our babies growth. We went in the room and the sonographer started to look over our cute bundle of joy within the womb. She checked his heart rate and looked for fingers and toes, she checked his organs but...she kept going back to his back, after the third time I saw something that didn't look normal to me, there was a sac on his back, I thought "a sac.....a sac....I know I learned about this in anatomy in high school, this isn't good...come on...remember Megan....remember"

"I am going to get your doctor. Why don't you wait out in this room." I snapped back into the moment...."okay." I said. We waited in the middle of all the doctor offices. I told my husband that something was wrong and that the sonographer kept looking at something. He tried to reassure me that everything was okay, but I knew better, and later I would find out, so did he. After what felt like forever the doctor finally came and spoke with us.  Her words cut like a knife...."your baby has spina bifida. He may never walk, he may be incontinent of bowel and bladder and he may be totally fine. The range is so big, we just don't know. We will have to wait until he is born to know what his mobility is like. I am sorry. Do you have any questions?" I fell against my husband's chest and sobbed, a very quite sob, my heart was broken.

The next several weeks and months were filled with doctor appointments, lots of web research and explaining to friends, family and co workers what spina bifida is, to the best of my ability. The nurse at primary children's told me that most parents just want to start out and let their baby just be their baby. They don't want to worry too much about the details of spina bifida. Since they couldn't tell me whether or not my son would walk that seemed like sound advice and I felt the same feeling that she explained other parents feeling. I remember wanting my son to stay in my womb. Where it was safe and warm and where I could feel him kicking. Feeling him kicking was the only thing that got me through the next several months. Anytime I worried about his future and what his life would be like he would get extra wiggly in my stomach and I told myself it was his way of reassuring me that he was strong enough to handle the life he had been given. I really had no idea how strong my little man would actually be.

The time came for him to be born and I can honestly say I felt nothing but excitement. I was ready to welcome him into this world and give him the best shot a mother has ever given her son, or at least the best I could possibly do. :)



Here is his opening in his spine before they closed it.



I had no idea how much my love for him would grow from the moment I first saw and held him and how it would continue to grow. Because I didn't know this I could never have imagined the difficulties I was about to endure and the deep need for a shoulder to cry on. I grew up around children and babies and so I never felt fear at the daily tasks of becoming a mother. I was surprised how reluctant I was to touch him, he seemed so fragile and I felt so ill equipped to take care of his needs. I remember asking the nurses to come in and help me pick him up so that I could nurse him. He was hooked to monitors, oxygen, an IV, and had a catheter in. Also I couldn't touch his back. Then there was a lovely nurse that decided it was time to teach me how to unhook the things that I could and how to position the cords. It was that little bit of knowledge that made me start to feel like his mother. Later my mother helped me position him onto my chest and lay down with him. Up until that point I had been nursing him with two pillows on my lap to keep him in a good position without touching his back. He was two days old and in that moment that I finally felt my baby lay his head against my chest, then I finally felt like his mother and he finally felt like my baby. Maternal instinct kicked in.

The tears just flowed and flowed as I held him against my chest for the first time.

The week at the hospital was difficult and I never left his side unless another family member was there. After a week we were able to go home and I was able to just let him be my baby, for a little while. A week later he started to show signs of hydrocephalus  . The doctors had warned us that 80% of children with Spina Bifida develop hydrocephalus. Still I hoped he wouldn't be one. He started to act lethargic and then stopped responding to sound. My mother told me I needed to take him in, I cried "but then they will do surgery!!" Of course that is what he needed and that is what we did. Back to the hospital we went. He came out from surgery and immediately reacted to sound again, his eyes got their sparkle back and I knew everything was better in our little world.

As the months went on we found out more and more about spina bifida, at each clinic visit and with each visit my heart seemed to break a little more. Time went on and we found out more and more about his limitations and abilities. The best part of this story is that I realized he was just like any other baby. He cried when he was hungry, when he learned to crawl he got into everything, his laughter lit up my world and his tenacity enthralled me.

We followed the nurses advice and we just let him be our baby. Sure there were doctor appointments, surgeries and therapy but at home he was just Carl James. We could tell early on that he had a goofy, sunny personality and we knew that though there were trials and there would continue to be trials our lives were better with him in it. I know many mothers that were either asked if they wanted to abort their child with spina bifida or the doctors tried to convince the mother to do so, but all are glad that they didn't. Having a child with a disability is hard but there are so many things we appreciate now that we probably would have taken for granted before. We have a different perspective now and we have a greater capacity to love and appreciate others and to appreciate the happy moments in life.

If you have been asked to go on this journey I can promise you that strength will be added to you, joy will enter your life, and your life, though difficult, will be better because you loved someone that at first glance may seem broken but on further examination is more whole than most people you have met or will meet in your life.