I am head over heels in love with my son Dominic. And the longer I’m his mama, the more likely you are to see me advocating for other people with Down syndrome. There are many in the world who would like to see Down syndrome eliminated–not because we have “cured” babies by somehow removing the extra copy of the 21st chromosome, but, rather, by preventing those children from being born in the first place.
When Dominic was born, the silence in the room was thick enough to feel. I asked, “Is there something wrong?” To her credit, the midwife said, “There is NOTHING wrong with your son.” I took one look at him and asked, “Does he have Down syndrome?” At that point the room that had been full of nurses and the just-in-case respiratory therapist and others I didn’t even know had been there all cleared out. The words “There is NOTHING wrong with your son” were still hanging in the air, but the actions said otherwise.
They put me in a room and closed the door. Six previous births at that hospital and I never got a room to myself and a closed–always closed–door. Coincidence? I have no idea. They sent a social worker who said she didn’t know about Down syndrome so I educated her about Down syndrome and early intervention services that were available in the area. Yes, I told her about it.
I cannot imagine what happens when a scared family gets a prenatal diagnosis with the pressure. Because our ultrasound showed bilateral choroid plexus cysts, the midwife recommended a level 2 ultrasound (the woman on the other end of the phone said I could “discuss options” at the level 2 ultrasound –we declined). We knew the “risk,” as they call it, but we believed that the “risk” was for Trisomy 18–and we were told that the average life expectancy was 9 days, often less for a male child. The presence of the cysts when combined with my age gave me a 1 in 8 chance of having a child with an extra chromosome. When I saw that Dominic had Down syndrome I cried, but my tears were tears of JOY. My child, my precious son, would live and grow and learn and love and thrive.
But when he was born, the vibe in the hospital wasn’t joyful, it was — at best — silent. The tone, all the facial expressions, all of it was uncomfortable. I tried to assure the staff that I was really, really OK. Our family doc didn’t come in for the initial baby check–I’d opted for the on-call physician just so we could get home faster. She couldn’t get out of the room fast enough and barely made eye contact. (our regular doc, when we went in a few days later, welcomed us and chastised me for not calling him).
If I had not known that a child with Down syndrome is a gift to be cherished and loved….If I had not known that there are so many resources and supports…..If I had not known that my child will have a normal life with normal interests and loves and hopes and dreams….If I had not known all of this and more, I might have absorbed the vibe that my child–my precious, perfect child–was somehow defective or “less.” He is different, yes, but he is not less.
And what can I begin to tell you about all I have learned in the last 2 years??? He soaks us in with his eyes. He charms everyone he meets. I wish I had more of him. He enriches our family and gives more to us than we could ever give to him. None of that information came with the diagnosis, but it should.
I want people to know. Too many women are deceived by the negativity and the inaccurate prediction that a child conceived with an extra copy of the 21st chromosome will “suffer” (ummmmm, who doesn’t???) or that the child will be a burden. Women deserve to know the truth. The prenatal tests are not out there to help you be prepared with better nutrition and setting up services. The tests are there to eliminate Down syndrome via abortion. Denmark, for example, strives to be a country that has no people with Down syndrome. None, I can’t even imagine the horror.
There are some things that prenatal testing does not–can not–predict. Awesomeness. Love. Opportunity. Awareness. We need more information out there going to families. A prenatal diagnosis might give more information, but a diagnosis of Down syndrome should not be delivered in a way that implies that the child is anything less than wonderful.
Thanks for reading, thanks for sharing. If I can touch even one family, help one person make a decision for life, then I am grateful for the opportunity.