When a Mom Wasn't Given the Right Resources With Her Baby's Diagnosis

Through donations from the community, friends and family, we make up baskets to deliver to families who have a baby born with Down syndrome. The baskets are filled with lots of goodies for the baby and resources for the family to access once at home with their bundles of joy.

Today, I delivered two baskets to very deserving and beautiful families. We only had the opportunity to visit the first one for a few minutes, but the conversation has repeated itself over and over in my head throughout the course of the day. The baby is still in the NICU, and her mom is anxious to get her beautiful daughter home so they can start to get into a routine and begin their lives as a family of three.

Most baskets that I deliver are to families who receive a diagnosis at birth. It can be a bit of a difficult time with lots of emotions and tears. It’s overwhelming for families, but with the right support system and community resources to help guide you, it can all work out. My little girl has brought so much love, laughter and light into our lives and to countless others all across the globe. Two years ago, the world became a better place.

The new mom told me they received a prenatal diagnosis and that, all throughout her pregnancy, doctors and medical professionals encouraged her to terminate the pregnancy. As she told me this, I felt my blood start to boil, and my heart ached for this beautiful family. The mom isn’t from the U.S., and English isn’t her first language. She wasn’t able to stand up for herself in the way she wanted to. She knew she wasn’t going to terminate her pregnancy, but she didn’t receive the support and guidance she deserved.

When we received our diagnosis, I was 15 weeks pregnant. My OB was caring and compassionate, and she allowed us to grieve. We did grieve. We went through a few weeks of feeling sorry for ourselves, and it included lots of worries, fears and being upset. We were entitled to this time, but we also were surrounded by people who didn’t allow us to wallow for too long. The medical professionals in our lives didn’t tell us they were sorry or that our child with Down syndrome wouldn’t have a bright future. They took us by the hand and guided us in the right direction. They gave us facts about our unborn child, not a book filled with grim statistics not relevant to our pregnancy. We focused on the ultrasounds and educated ourselves.

I don’t know what my husband, James, and I would’ve done if we were told over and over again this child has no right to be in this world, that she would be a burden on society or on us and our family. We looked up to these people; we valued their opinions. You’re vulnerable when you receive news you don’t expect. You’re in a state where emotion takes over logic. You fear the worst and let worry creep into your mind. All you need is someone to hold your hand and tell you it will all be OK. You need to be told to breathe and relax. You don’t need people who are ignorant to dictate what you should do with your body, with your child, with your future.

I’m not for banning abortion when a family receives a prenatal diagnosis. I wasn’t put on the earth to judge others. I believe telling a woman what she should and shouldn’t do with her body is the wrong way to go about it. I’d like to see a law that states when a family receives the diagnosis, they must get educated, meet with a family and meet with those who are qualified, those who can explain the beauty of Down syndrome and what our children will achieve. With some education, a woman and her family can have the opportunity to see the potential, the beauty, the gift that lies ahead.

As I stood there with this mom today, she felt lost. She wasn’t given the resources, the forms, the community supports available to her and her family. She’s fearful of the future and is unsure how to proceed. I reassured her I will hold her hand and be the support she needs and deserves.

It’s going to take all of us to change the world. We all need to be in this together. We need to be the parents our children need us to be. We need to keep advocating. We need to keep showing the world the beauty that lies within each of our children. When we stand together, we will be the change the world needs.

Follow this journey on A Perfect Extra Chromosome.