‘Tell me if it’s a boy or girl! Why does a doctor have to call me?’ This news changed our entire life.’: Mom is pressured to terminate Down syndrome baby, realizes she made the right choice and feels ‘guilt for fearing him’

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“For as long as I can remember, I have always wanted to be a mom. I dreamed of being pregnant, giving birth, and staring into the eyes of my own flesh and blood. I longed to have a baby of my own as I watched my friends pass me by as they started their own families. Seeing the bond between my closest friends and their new babies was something I couldn’t quite describe. A love I had never known. See, I had been through an ugly divorce and felt the privilege of becoming a mother was suddenly stolen from me. My biggest fear was I would not get to experience the same joy.

Then, it all changed. I met my husband, who had also been married and divorced relatively quickly, and we clicked faster than I ever had before with anyone. He understood my heart and there was a compassion about him I had never felt in anyone else. Everything we wanted in life had aligned. He became the best friend I never knew I was missing. We were engaged 6 months later and a few months into the engagement I discovered I was pregnant. It seriously did not even feel real. I think I spend the entire day taking every single brand/type of pregnancy test on the market to make sure this was actually happening. You know when the lady behind the CVS cash register says, ‘Honey, if the first one was positive, you are pregnant,’ then you probably are. I just couldn’t believe it and was nervous to tell Justin. His reaction was beyond perfect. ‘Well, we’ve always wanted to be parents. It is all in God’s plan.’ I will never forget this. He said, ‘Thy will be done.’  This is a phrase which often repeats in my head and makes me smile while saying the ‘Our Father’ prayer.

Courtesy of Elizabeth Hartrich

We pushed up the wedding and were thrilled to be welcoming a baby! I made my initial appointment at my OB office to confirm my pregnancy and to go over paperwork. All the typical questions were asked and one of them was if I wanted to find out the gender of my baby. We agreed since it was covered by insurance and we were eager to find out if the babe was a little boy or a precious girl. It sounds so naive now, but it is how we viewed the test and how the nurse presented it to us.  ‘I mean, it is covered by your insurance, why wouldn’t you do it?’ Later, I learned these tests aren’t just to determine the sex of a baby but to detect for genetic abnormalities. At the time it was simply a test to find out if we were having a baby boy or girl. That is before our world was completely changed.

Courtesy of Elizabeth Hartrich

I was told it would take a few weeks to get the results back from the NIPT test but it was taking longer than normal. I called the doctor’s office over and over with no call back. I checked in through the testing companies website and it just said ‘consult your doctor.’ I didn’t get really nervous until I called my OB office and told them I hadn’t heard anything about my genetic testing. She asked for my name, told me to wait a moment, and we were put on hold. For quite a while. It was then I a pit formed in my stomach telling me something wasn’t right.  She finally came back to the phone and her voice had softened. That is when I was positive something was truly wrong.

She became quiet. ‘I will have to talk to the doctor and have her call you.’ Ummm..say what? ‘Can’t you just tell me if it is a boy or a girl? Why do you have to have a doctor call me?’ Finally, hours later, she called. This was it. The news which would change my entire life. ‘So, we have your test results,’ she said softly. My face was smashed behind a cold cell phone. The long pause is something I will never forget. She went on, after moments of silence saying, ‘It shows your baby tested 90% positive for Down syndrome.’ Everything turned gray around me, almost like I was in a sad movie, and I thought there was no way she could be right. Tears streamed down my face like never before. It seemed like I was looking in from the outside.

Backing up a little, I love to write. I wear my heart on my sleeve. I am very emotional and love expressing my feelings. I have always felt like I knew what to write about. The words typically would flow smoothly and I had always felt like a decent writer. This time is different. After all, this wasn’t ‘typical,’ and it is okay. I have deleted and rewritten more in this piece than I ever imagined. Anyway, getting back to why you are all here. How I felt when I learned my baby most likely had Down syndrome. Well, I felt dead inside. It seemed the happiness of the pregnancy just ended. I felt like no one would want to congratulate me any longer and I couldn’t have the life I wanted. What I was so happy about previously was now mourned.

A million questions circled through my brain. ‘How could this happen to us? How did all of my other friends and family have healthy, typical babies? How do I not know anyone this has happened to? Did I do something to deserve this?’ It was very isolating. I felt so, so alone. When I asked the nurse to explain what the test results even meant, she said, ‘I am sorry. I don’t know many details. You will need to call the test company.’ Seriously? You just delivered a life-altering diagnosis and you cannot even explain what it means? I was so confused.

In the back of my worried mind, a glimpse of hope appeared as quickly as it left. I asked, ‘Well, do you even know if it is a boy or a girl?’ At this point I felt all the excitement of learning the gender was taken away. ‘It’s a boy!’ she said as she pretended to ignore the ‘somewhat diagnosis’ she just presented.

Our doctor’s office scheduled us to see a genetic counselor a few days later. I was optimistic and hoping it had to be a false positive. I spent hours upon hours googling genetic tests with false positives. I clung on to anything I could in the moment. I was searching for this to be wrong. I couldn’t accept it.

Meeting the genetic counselor was so sad. That’s the only way I can describe it. She asked how we were doing. Hmm. What I wanted to say was, ‘I just found out our baby may have Down syndrome. How do you think I feel?’ I was being polite and asked back, ‘How has your week been?’ She said, ‘this week has been rough. You are our 3rd Down syndrome diagnosis this week.’ First off, we didn’t have a diagnosis so I didn’t understand why she was treating us like it was for sure a final thing. She handed us a booklet titled something like, ‘You are having a baby with Down syndrome.’ This is when it sunk in.  I looked around. There were tissues and framed quotes about life and how it was all going to be okay. It felt like a bad dream. I sobbed. I sobbed more. My husband’s eyes welled up as he tried to remain strong for me. He comforted me and through his tears as I completely lost myself in the moment.

The walls in the office felt like they were shutting in on me and it was as if someone was telling me someone I loved very dearly had died. I cried more than I have ever cried before. My body felt useless, I felt like it was my fault, and I did something to cause this. She reassured my husband and I it was nothing we did or didn’t do. It just simply happens when the cell divides. I just remember, in that moment, wanting to run away from life. I didn’t know what I needed, but I didn’t need to be talking to this woman.

Everything presented was so negative. She told us we had options. She went through a lengthy list of health concerns for kids with Down syndrome and told us to consider how it would affect our other children if we decided to have more. She also asked us to think about our marriage and think about having a child with special needs  She asked us to strongly consider how would it affect us.  The options she presented were giving up our baby for adoption or having an abortion.  My husband and I were, and still are, dumbfounded by this. I think I even said to her, ‘So, just because he has Down syndrome, you offer termination?’ I was just confused. ‘He isn’t going to be a vegetable, right? He can still have a good quality of life.’ I was grasping on to any hope I had at this point. She, once again, went through the lengthy list of health conditions people with Down syndrome can have which did not comfort or help me at all.

As much as we kept telling our high risk doctor and our genetic counselor we were having this baby and there were no other options for us, they still would bring up termination. I will always remember going in for the 20-week anatomy scan.  The joy of seeing our baby boy’s legs kick up and down on the screen was quickly squashed by the doctors following words.  ‘We are getting close to the cut off here in the state of Ohio for termination. But, the good news is you can drive to Michigan because they allow it up to 24 weeks.’ I just felt so incredibly sad. Sad they acted like terminating this baby would be the acceptable choice and sad because while the doctor was speaking I could feel our baby kicking me and showing me he deserves a chance at life. I do not like how the high risk doctor and the genetic counselor made me feel our decision to keep the baby was not normal. From then on out I felt I was carrying a monster baby. Instead of greeting me with happy phrases like, ‘Congrats!  This is your first baby!,’ I was now being tiptoed around and hearing things like, ‘I am so sorry.’ If they only experienced this for themselves, they would know it was nothing to be sorry for.

Courtesy of Elizabeth Hartrich

With the help of my husband and a lot of prayer, I decided I would do what I needed to do to prepare for this baby.  This wasn’t what I had ever expected to happen to me, but yet I needed to move forward. I knew there had to be a higher purpose for all of this. A purpose so much greater than I could have ever dreamed up. You see, I was taught when life hands you lemons, you make lemonade. This better be some damn good lemonade.

Once I came to terms with our babies diagnosis, I knew I had to get help. I was worried, depressed, and just so scared. I felt like I had no one who understood what I was going through. I got connected to another mom who was once in my shoes who laid out her heart for me. She literally dropped anything and everything to make sure I knew things would be okay.  She told me they would be more than okay.

I met her daughter, Alice, who happened to have Down syndrome, and instantly felt a love like nothing else. She looked up at me, smiled into my heart and I knew, for the first time the entire pregnancy, I could do this. I finally felt the light shining through. From then on, there was so much hope. My new friend introduced me to other mommas who had walked this path before me and they took me in like family. I felt supported in a way which is hard to articulate. The light began to shine brighter in my heart. Oh, how bright the light would be. I had no idea how much joy I was to endure.

Edward Keith Hartrich was born on May 26, 2019. I will always cherish the moment they placed him in my arms and he laid his sweet eyes upon mine. It was so much greater than I could have ever imagined. I felt such immense love for this baby, but yet, also some guilt for fearing him as well. When I looked at him, I did not see Down syndrome. I just saw my sweet little Eddie, with a whole life ahead of him. Not one which would present challenges and health concerns to my family and my marriage, but one which would strengthen it. He would teach us lessons you simply cannot learn otherwise.

Courtesy of Elizabeth Hartrich
Courtesy of Elizabeth Hartrich

We were the lucky ones. He is the best thing to ever happen to me and I cannot imagine my life without him. He has changed my perspective on life and love and makes an impact on those around him every single day. I am forever changed by this little boy. It makes me sick to think there are other families out there who could have missed out on this love.  Fear is an intense emotion, but love is so much greater. It was worth it all in the end. I know I was chosen to be Edward’s momma and I just feel so honored. Things won’t always be easy, but it is okay. Times will be celebrated, they will be worth it, and we will not take him for granted, ever.

Courtesy of Elizabeth Hartrich
Courtesy of Elizabeth Hartrich

I always wanted to be a mother and I feel like this was the best motherhood assignment I could have ever been given. My heart feels so much gratitude when I think of this whole journey coming full circle. It is so amazing to be on the other side.  I hope to be able to pay it forward to some fearful moms in the future. I hope to let them know the feelings they have are valid and they are okay, but don’t lose hope. You don’t know it yet, but you just won a lottery in life.”

Courtesy of Elizabeth Hartrich
Courtesy of Kelli Porter Creative

This story was submitted to Love What Matters by Elizabeth Hartrich. You can follow her on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more beautiful stories about children born with Down syndrome here:

‘The doctor walked in and said, ‘He has Down syndrome.’ I LOST IT.’: Father comes to terms with son’s Down syndrome diagnosis

‘Yes, Meg. The baby is healthy, stop worrying.’ Coward. She knew. I saw it and felt sick. I didn’t want to hold her.’: Mom unknowingly births baby with Down syndrome, ‘I want to shout her worth to the world!’

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