Here I go again.

The last couple weeks I've had the pleasure of spending more time than usual with several adults who have Spina Bifida. Some smart, amazing, capable, kind, interesting people. They know they are among the first surviving generation of people with Spina Bifida, and they are showing all of us what that looks like.

I invited a group of these women to speak to some of us parents at an SBAK playgroup last weekend. It was a great afternoon with lots of encouragement and advice. But one story stuck out to me. One of the women brought her dad, and I asked him what it was like when she was born and they learned she had Spina Bifida. He said the doctor came out and told him, "The good news is your wife is okay. The bad news is your baby has myelomeningocele." Of course he had no idea what that was. He asked if they could fix it. The doctors said they could, but most people choose to do nothing and just make the baby comfortable. She would never be able to walk. She would be a vegetable. Her dad told the doctor to fix it. The doctor asked how he was going to pay for it, and he said he would rob a bank if he had to, but go ahead and fix his baby girl. That was 48 years ago. Now this woman is a full time nanny, is trying to qualify for the special olympics rowing team, and is like another mother to nearly all the local adults with SB. She's a special woman.

Today I hosted a group of adults with SB for a program about education options. And just like any playgroup where parents get to talking, when there are parents of adults with SB in a room together, the conversation at some point always turns to diagnosis day. My fellow SB parents, apparently the trauma of that day never fades. There was a mother there today who said when she entered the parking lot where we had the meeting, she had a flashback to 32 years ago, when she brought her baby daughter to this same building (it used to be a hospital for "crippled" children) for her first Spina Bifida clinic. She carried her six week old into the clinic and saw children using walkers and wheelchairs and she ran back outside to cry and "have a talk with God."

She then told her diagnosis story. Of course she didn't know before her baby was born. All they told her was there was a hole in her back. No official diagnosis terms, just "hole in the back." A pediatrician came to visit her the next day, and he told her they were going to send her baby to a real nice place where she could visit on weekends and holidays. He said the mom couldn't possibly take her home because she would be a "vegetable on your couch" and she wouldn't be able to afford her medical care. She should go home and try again and she would surely have normal babies. She told the doctor she was taking her baby home. She was only 19 at the time, and totally overwhelmed, but she went to the NICU morning till night every day. She still remembers she was in 5R in the NICU. The baby next to her daughter was named Christopher, but no one ever came to visit him and he had a sign on his isollette that said, "Do not feed." One day she asked the nurse what the story was with baby Christopher, and the nurse said he had Spina Bifida, and the parents chose to not treat him. Apparently he starved to death. That was 32 years ago.

This is mouth-dropping awful, right? Just plain archaic and cruel and ignorant and unthinkable. I'm so glad times have changed.

But have they really changed at all?

In the year 2011, moms are STILL told that their babies with Spina Bifida will be vegetables. The actual word "vegetable" is still used. Doctors still often advocate for the parent to give up on their baby. Now instead of waiting until full term to deliver and starve them to death, they deliver so early there's no chance the baby would survive.

I don't say this to be hurtful to anyone who has made this choice. I say this out of anger for how little the world has changed in the past 48 years.