Last night I was having a great conversation with a good friend and colleague of mine. She is currently in the process of getting her doctorate degree, and is taking an ethics class. Last week their topic of discussion was on the “ethics” behind terminating a pregnancy when the parents are told their baby has Down syndrome. While I try not to get too emotionally charged about this issue because I know it is a deeply personal decision, I do have a strong opinion that the parents should be given far and balanced information. For example, I don’t think it is right for the physician delivering the news to assume that the parents’ decision will be to terminate. I also do not feel it is “ethical” to give the parents only the scary medical, worse case scenario information without the other side of the story. The other side of the story needs to be told from the perspective of those of us actually living the life. Yes it may seem scary or overwhelming to imagine your life with a child with Down syndrome if your only thinking of the possible health issues, the time he will spend in therapies, how society will accept or not accept your child, and what your other children will have to face having a sibling with Down syndrome. In honesty, these were all things that came crashing into my world when the doctors told me they believed Carsten had Down syndrome 10 hours after he was born. I can now tell you that nearly all of those thoughts and worries have not manifested themselves in reality. As I have said before, fear is dirty liar. Don’t believe fear. Look for the light. In the light, you will find the truth. Do we have hurdles and stress? Absolutely!!!!! The truth is the positive far outweighs the hurdles and stress. It isn’t even close.
So after talking to my friend about my opinions on the topic, she asked how I wished the doctors had told me. After some further contemplation, here is how it went vs how I wish it would have gone. Take a journey with me into my fantasy of how I wish it would have gone.
How it went: Ten hours after Carsten was born while I was holding our precious new baby 7 doctors (a mix of attendings, residents, and medical students) filed into my hospital room. MJ was sitting next to my bed on the left. They entered silently and very sombrely.
How I wish it would have gone: I wish only two physicians had entered the room. I don’t really care which two, but I feel two could have done the job. I wish they had entered with smiles and happiness. For heaven’s sake I just had a baby….let’s be happy. I wish they would have come over, acknowledged Carsten, and congratulated MJ and me. I wish they would have introduced themselves to us.
How it went: With tears in her eyes, the first attending physician asked if, “anyone had talked with us about the concerns they have about our baby.” After shaking my head no, she says now crying, “your baby has a lot of the markers of a child with Down syndrome.” Then she lists a few of the physical signs that Carsten had.
How I wish it would have gone: I wish she would have:
A. Not cried and instead actually smiled sweetly
B. Used Carsten’s name as the birth certificate had already been filled out and it was official
C. Intermingled some positive words in with her clinical observations. Such as, “see how it looks like he has fireworks going off in his eyes? So beautiful isn’t it?” Really his eyes are so beautiful, and it does look like fireworks are going off in his eyes.
How it went: When I asked what does this mean, the next attending started listing off all of the possible scary medical things that can accompany Down syndrome. Some I needed to know in that moment, but most I didn’t. She started the list by saying “mental retardation.”
How I wish it would have gone: “Individuals with Down syndrome do have developmental delays both physically and cognitively. While intellectual disabilities and delays are a reality, that does not define who they are as people. Carsten will learn to read, ride a bike, and be potty trained. He will do these things on Carsten’s time table, and I don’t know today what that will be. Only Carsten knows. He will have close, loving relationships with his family and friends. When looking at the impact that individuals with Down syndrome have on their families, there is a research study that was led by Dr. Brian Skotko. Dr Skotko is a geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital, and happens to have a sister with Down syndrome. In his research he found that 99% of parents said they love their child with Down syndrome. I think if you surveyed a group of parents of teenagers you would find a rate much lower than that. (LOL! I don’t think most parents would appreciate humor in this moment, but I would have) He also found that 97% of brothers/sisters, ages 9-11, said they love their sibling. Individuals with DS are living full, happy lives. The important things are to set your expectations high, and most of all love your new baby. That’s really all you need to focus on right now just like ever other new parent on this floor. There are many resources available in the community. I will leave you information about a local group….(insert the blank….now of course I would love for them to give out information about our GiGi’s Playhouse and hand them the binders and book we have left all of the local hospitals.)” Then I wish they would have asked if we had question. Smiled and congratulated us again on our beautiful baby because honestly he looked like a cherub….so cute! 😉
So that’s how I wish it would have gone. I am sure every parent whether they received the news prenatally or after their child’s birth have a movie script like this one. The way they wish it would have gone. This is just mine. I really think it would have made a huge difference, and saved MJ and I a lot of unnecessary tears. I think this discussion would have shown us the light instead of shrouding our minds in the darkness.