Too many times, at a prenatal diagnosis of SB, a new mother and father hear words that terrify them. Sometimes doctors paint such a horrible picture that parents forget there’s even a baby in there at all. I asked a few parents what they wished their doctors would have told them about their babies on that life altering day. Here are the responses.
“This isn’t really what I wish they would have told me, because my doctors were very supportive, but this is just a comment I have in general about the whole situation. We were obviously, like many others, given the opportunity to terminate our pregnancy. That obviously was not a choice for us. But I wish I would have known during that crazy time, that when I held my daughter for the first time (3 days after birth) that my world would completely stop at that moment, and my life would never be the same-regardless of her condition, which to this day I refuse to call a defect. She is not defected. She is perfect in her own way.”
“I wish they told me all the positives rather than just all the negatives. Not once did the doctors say anything positive to me.”
“That she was going to be healthy. Just because she was born with spina bifida didn’t mean she wasn’t born with GREAT vitals. I think some moms think that their babies are not going to be born healthy, which really isn’t the case.”
“I wish they would have gotten over the diagnosis and remembered that my child is a unique individual that just so happens to have spina bifida. SB never has, and never will, rule our lives. It is just PART of it.”
“I wish they had not treated us as if we were idiots because we refused a termination.”
“What a loving child he was going to be. How smart he would be, with a great personality.”
“I wish they would have told me how NORMAL he would be. How amazingly smart and funny! How it doesn’t matter that his legs don’t work like everyone else’s. I wish they wouldn’t have painted such an ugly picture of spina bifida. Like how I was doing an inservice to my child by not having an abortion, and telling me he would have no quality of life. He has quality of life!”
“One thing I wish they would have at least mentioned is that I was still having a beautiful baby. The doctors are so focused on the diagnosis, it makes you feel like you are having a science experiment or something, and not that you are still going to have a beautiful, wonderful, cute little baby. All the things they tell you make you forget that.”
“I wish they had told me that he would go to school and make friends, and come home and tell me about his day at school at age 3. Strader is not a diagnosis. He is a very smart 3 year old who impresses his teachers daily. They told me the other day that he is more advanced than most of their 3 year olds, and I simply said, “Yes…and your point is?” I just thought to myself, I know my kid is smart. I know he can’t walk, but he is really smart! That is what I would have liked to have been told, is how smart and witty he would be.”
“I wish they would have told me about her smile. How she can make a room light up. How strong she is, no matter what. How compassionate she is!”
“I wish they would have told me that when I look at her, I wouldn’t even see her disability, just the amazing little person she is!”
“I wish they wouldn’t have made it sound like the end of the world. They gave THE worst scenario ONLY, and kept using the statement ‘poor quality of life.” I wish they could have told me he would be as sweet, loveable, and feisty as his twin. The only true difference is one of my boys has sweet little wheels to get around. They are both such blessings.”
“As a grandmother who went to doctor appointments, I agree with everything said. I could remember only one nurse out of the doctors and nurses who actually treated my daughter normal, and was cheerful about her having her baby. They seem to take away the joy of having a beautiful baby just because of a disability. Each baby is precious!”
“I wish they would have skipped the evil genetic counselor who repeatedly kept pushing termination, even after we asked her to stop contacting us. I wish the EGC had not told us it would be irresponsible to have more children. We’ve since had 2 additional children, neither having SB. I wish they would have introduced us to a spina bifida clinic, so we could talk to the doctors who really know what life is like, instead of just the textbook-worst case scenario-gloom and doom docs. I wish we had been introduced to other families with kiddos who had SB, so we would be encouraged by their beautiful smiles and family dynamics. I wish the neurosurgeon hadn’t told us institutionalization was a good option. But what I really wish is that they could see us now. P.S The EGC came by my hospital room after delivery and gave me a cactus. I let it die.” <—You know that’s funny. Laugh.
“I wish they would have had the humility to admit that doctors do not know everything, and we are learning new things every day about the human body. My son is my biggest joy in life. He is perfect despite his imperfections. Having the ability to walk will not add or take away any value from him as a human being. He is love, and joy, and hope, and determination, and inspiration, and he will inspire and amaze the world (says his mom).” <—Moms are right a lot. Just saying.
“I wish I would have been told that my daughter would be beautiful; that she’d be smart and silly; that she would light up an entire room with her smile; that people would look at her and not know she has a disability; that she would be so strong and nothing would keep her from getting into anything she wanted to; that she is not a tragedy!”
“I wish someone had told us his head wouldn’t actually look like a lemon. Had I been able to picture a regular looking baby, rather than a fruit salad, I might have had an easier pregnancy. That, and the fact that he is the MOST charming kid I have ever met!”
“I wish the Dr’s could have told me that this fragile looking baby with wires all over…would one day be sporting cheerios stuck to his face and handfuls of dirt going to the mouth! I wish they could of told me about birthday candles being blown out, happy shrills at Christmas, and throwing leaves in the fall. I wish they could have told me how he would bring us his ball over and over again trying to learn the concept his self, and how cute it would be when he flicks the wheels on his toy cars with his little thumb! I wish they could have told me about how when he falls asleep he needs to rub his treasured favorite blanket with his chubby little hand, and tickle the inside of his ear with the tags! I wish they could have told me how he would love his sisters one minute, and demand independence the next and how he would learn right and wrong like any other kid. I wish they could have told me how he would stand on his little knees and look out the window yelling “Da!” (Dad) waiting for Daddy to come home and how he would belly laugh hysterically all over a game of peek-a-boo (every single time!)! I wish they could have told me how his mere happiness and zest for life despite a few challenges would bring others so much joy and help them to count there own blessings. I wish they could have told me all of this but instead I heard about tests, scans, surgeries, as if he wasn’t real. I wish they could have told me these things but they didn’t. But it was okay…I knew it the moment I looked into his eyes .”
Now it’s my turn. I wish my parents had been told how thankful I’d be that they gave me a chance; how I’d love life, all of it, and embrace every day given to me because I know they had another choice. I wish they had been told that there was a plan for my life, for my disability, for my being born specifically to them. I wish they had been given some hope for my future. I hope this blog spreads some for the next generation.