I never thought I would say that I have become involved with the political world.  Last month, I was asked if I would share my story in support of senate bill 164.  This bill would ban abortions from being performed because of a Down syndrome diagnosis.  The woman would not be charged, but the physician that performed the abortion would be charged with a fourth-degree felony and could have their license to practice taken away.

My intentions as a wife, a mother, and a nurse were never to get involved with matters that involve testifying, interviewing, being on radio shows.  This is completely out of my comfort zone, but when you are called to do something; you do it!

When I was approximately 14 weeks pregnant with Oliver, I was offered (for the second time) a cell-free DNA test.  I declined this test with my first three pregnancies and initially, I had no desire of having this test performed on this pregnancy.  Termination was never an option for me, and I didn’t see any purpose in this test.  At 14 weeks, I went to the ER on a Saturday for a suspected miscarriage.  The ER physician performed and ultrasound and found a heartbeat.  He referred me to my obstetrician on Monday.  That Monday, I went to my obstetrician where she re-offered me the cell-free DNA test.  This time I accepted.  My thought process was a little different than before.  I thought that if there was an issue with my baby, then we (the medical providers and myself) could be better prepared to care for my child.

On Dec. 2, 2014, I received a phone call from my physician stating, “Your blood work came back positive for Trisomy 21.  I am sorry your son has Down syndrome”.  I remember thinking, “I am going to have another boy! She said Down syndrome.  That can’t be right!”  She went on to tell me that there was a 99% accuracy rate.  I was delivered this news on the phone, in my sister’s hospital room, holding her “perfect” newborn baby, with my mother and my sister staring at me.  And!  There is one more thing!  It was bittersweet as I was holding my sweet niece Fyona, because my sister and I were due a day apart. Except, I lost my Christopher and we never got to meet him.  I grieved over Christopher and celebrated Fyona, and was delivered the news of a Down syndrome diagnosis for this baby that I was currently carrying all in a matter of minutes.  After a minute of silence on the phone with my doctor, she offered for me to come into her office to discuss my options.

An hour later, I (by myself) arrived at my physician’s office to talk to her about my results.  My physician sat with me and we discussed what my future would look like with a child with Down syndrome in it.  I, personally, never felt as though she was pushing me to parent or to abort.  We did discuss all the therapies and the importance of early intervention for the child to be successful.  My physician made a referral for me to  meet with Maternal Fetal Medicine for additional testing and care.

After meeting with my physician, I left the office without any information regarding Down syndrome.  I honestly felt as though I was given a death sentence.  I drove home and went straight to my room.  I laid in my bed and cried for hours!  Eventually, my husband came home and I had to stop crying long enough to tell him the news.  I didn’t know of anyone with Down syndrome.  I never see people in my community or my kids’ schools with Down syndrome.  At that time, I was a nurse in the ER, and I had never taken care of a patient with Down syndrome.  I felt so alone and alienated.  I did what all parents do, and I pulled up Google and searched “Down syndrome”.  Naturally, I focused on all the medical complications and conditions that he would be at an increased risk for because of the Trisomy 21 diagnosis.  This only made me feel even more lost and heartbroken.

A week later, I met with Maternal Fetal Medicine.  They performed an ultrasound and they offered an amniocentesis.  This is the only test to officially confirm a Down syndrome diagnosis.  Because of where my placenta was positioned, the needle would have went through my placenta to get the sample and this would have increased my risk for a miscarriage even higher.  We decided against the amniocentesis, because it was not going to change my decision to parent.  We wanted this child.  We loved him.  We had seen his heart beating!  His body wiggling!  Who am I to decide if my baby should be allowed to live or if I should end his life?

We met with a genetic counselor and we were given printouts on Down syndrome and a list of resources.  We were told what our future would look like with this special needs child.  We were told of the increased risk of cardiac anomalies, respiratory infections, gastrointestinal disorders, feeding and digestion issues, hearing loss, visual impairment, and low muscle tone.  We were told of all these different therapies he would need and all the additional work that would be involved with raising a child with Down syndrome.

Here is the thing, this awful picture was just painted for us with this negative information that was just given to us and then we are asked what we want to do with the pregnancy?!?!  Really?!   Is this encouraging to families that are unsure what to do with a pregnancy?  Do you think this is going to give them hope for an unsure future?  Do you think that they are going to make a parenting decision?  Termination rates are anywhere from 67%-85% (based on a study in 2012, depending on age, race, ethnicity, and gestational age).  This is a huge range and the numbers are high!  This is heartbreaking!  Why is it heartbreaking?  Because, I know what they are missing out on in their lives!   Nobody tells you how amazing your life will be with this child in it!  Nobody tells you that your face will hurt from smiling all the time!  Nobody tells you that you don’t have to be brave or strong!  Nobody tells you that your love will move mountains for this child!

There is this common misconception that life is harder with a child with Down syndrome and this just isn’t true!  We lead a pretty normal life.  Oliver will do all the things my other children do, but it might take him a little longer to do them!  There are many challenges and we grieve, but it has nothing to do with my child, but with the way the world views him.  He isn’t a burden!  He is a joy!  Society doesn’t see his worth or his value.  Society feels it is acceptable to terminate because of what? He is an inconvenience? Additional cost? Additional work? Doesn’t look like everyone else? I don’t know!  Society focuses on perfectionism!  I can tell you that Oliver’s extra chromosome is what makes him perfect!  We are constantly fighting for Down syndrome rights.  And, here I am.  Doing just that!  Fighting their rights!  Their worth!  Their value!

There is a saying in the Down syndrome community that is very true and we live by “more alike than different”.