Sep 11, 2012

Medically Intensive Kids

I want to write about this while it's still somewhat fresh in my mind. Someone in our family recently told me that a family friend said that the reason she had home births was because if anything went wrong she didn't want the child(ren) to survive. In the context it was pretty obvious that they'd been talking about Ainsley and the inferred meaning is obvious.  It's quite astounding, really, what "well meaning" people will say. It's okay, I've developed a thick skin and it's not a surprise to me to know that some people think this.

I'm sure this "friend" was able to have beautiful natural births in her own home and perfect healthy little pink babies. Probably she was up making dinner the next day. And of course she must have effortlessly nursed all her babies. Maybe she even sewed their clothes. It is easy to be smug when you are lucky. And luck is really what it is. The chance of having a child with birth defects (hate that term) is quite high and occurs randomly across all ages, races, classes and people with all levels of education. It's a fact.

The truth is that modern medicine has caused many women to believe that birthing children is safe, but it wasn't always that way. My own mother's mother died as a complication of a home birth because the town doctor was "away on holiday".  My dear friend Karin died after child birth last year and she was in a hospital. Not only was giving birth dangerous for mothers, in the days before modern medicine, many children were still born or died shortly after birth. Some still do. Another fact.

I myself was an unplanned teenage pregnancy between two people who were not ready to be parents and in a different decade I probably would have resulted in an abortion instead of being adopted. In addition I was born 2 months premature weighing only 3lb 3oz. If I had been born a decade earlier, I might not have lived. I never had health complications but many premature babies do. With changes in technology these days more and more micro preemies can be and are saved  at a time when ironically they could legally be late term aborted. I have a lot of personal feelings about the value of all human life.

There are a lot of people who believe in survival of the fittest. This theory might make sense when you think of it purely in an advancement of the species way but the problem is in the execution of the theory in real life with real people. I know from comments like the one made by the family "friend" that some people think somehow we should have "let Ainsley die".   When people are sheltered in anonymity like they are when they post comments on the Internet or YouTube you learn that there are actually far more people who believe kids with birth defects should die than you would ever believe. I've had the most heartless comments left on videos that were posted there as a means to share Ainsley's achievements(which I immediately delete). I do believe some of these people might go so far as to commit murder and justify it in a Hitleresque kind of way.

I think sometimes people think that the doctors come in after the birth and ask "Would you like us to kill euthanize allow your child to pass by withholding medical services?" In all but the rarest situations they do not say anything of the kind and do what they can to protect life until it's obvious it is causing suffering to the patient. It's called the Hippocratic Oath. So when a child has trouble breathing they offer a tracheostomy, when there is a defect in an organ or limb of the body they attempt to repair it. Each "issue" is treated on its own. And so the child's life is saved and made better.

An interesting fact is that the tracheotomy is the oldest known surgery performed. Even though many people know little about them they have been performed successfully on children (and adults) for hundreds of years. Although a parent might be able to legally consent to withholding the surgery to do so could in many people's eyes, constitute murder. In Ainsley's case that was all that was needed to save her life. Further surgeries enhanced her life.

People in general are not against life saving surgeries or tracheostomies. If they were in a car accident and the choice was a trach and reconstructive surgery or death most people would not only want medical intervention they would expect it. Nobody would question whether the medical costs and care were "worth it". At the root of the difference between this scenario and saving the life of a child born with birth defects is the truth that some people don't believe these children are "worth saving" because they believe these children are "less" because they are "born this way". And this is when we get into very complicated issues of Bioethics and often, I believe, discrimination against people with intellectual disabilities. Many people think it is different if the child is intellectually "normal". Equal rights for the intellectually disabled is the last frontier of civil rights.

Advancements in medicine in recent years cause many children who would have previously died to live or live longer. Having one of these children in my own family I must admit the truth which is that it can place an enormous burden on the family when these children are brought home. But in addition these children bring amazing gifts to the family and world. Like all adversity we would not choose it, but it can make our lives richer and more meaningful. More importantly these "defective" children are people. Their own lives matter as much to them as yours does to you. Many of them have endured more suffering than you can imagine and yet their spirits are strong and shine regardless. If you are lucky enough to know one of these special children then you know what I mean.

And on that note I'd like you to watch this video (especially if you are secretly one of those people who believe these children should not be saved.). Pay attention to the lyrics of the song. Remember you can click on the arrows to make it full screen.

And on that happy note perhaps you might like to read my Happiness Week 36 post. It's a little bit lighter.


  1. Amen, Susan!! Thanks for this post. xoxo

  2. No matter is many stories like this I hear about, and no matter how many times people have said similar things to me, I am still amazed and stunned and baffled by them. Thanks for the great post:)

  3. Great post Susan! OPB recently had a special bioethics that was very interesting - don't know if you had a chance to catch it?

    As a side note, my daughter was born at home and my midwife in no way, shape, or form let my child pass because she was "defective". Don't know what kind of backwoods midwife this friend is talking about, but most midwives are board certified and have taken the hippocratic oath also...

  4. Wow! That is amazing what other people think/say. We sent our daughter to kindergarten this week with a lunch box!!! She eats!!! It took five years for her swallow function to work, but she now proudly eats her purees with the rest of her classmates. I was thinking about her discharge papers from the hospital after she was born--they recomended that we put her in a nursing home, and suggested that her coming home with us was almost abusive...they also told me not to put my "eggs" in the Madeline basket and to focus on my able bodied toddler (now almost 8 years old). I so want to show those people how much Madeline has enriched our lives, but sadly, I'm not sure those folks would get it. I'm recovering from stage 3 breast cancer and there are people that suggest I gave myself cancer by not eating well, exercising, etc...just completely ignorant. On the other hand, who wants those kind of surface level friends anyway? Sad, but sometimes you just have to weed out people like that from your life.


  5. Just sayin'

    If you give a girl a goldfish and she eats it.....
    Well you just gotta celebrate it.
    LIke huge right?
    Sharing the love to Miss. Ainsley.
    Love us.
    I hope you love it Susan.
    All the love in the universe from me to you.

  6. Love this post Susan.
    Well said, well put, and from the heart.
    We got heart baby.

  7. Susan--I absolutely LOVE this have a gift with words. Thanks for sharing your words with the world. I hope many people see this post. Hugs--Jen (Linnae's Mom)