Recap: A mother-to-be is told that her baby has markers for Down syndrome, indicated by an amniocentesis. She struggles with the decision of whether to keep the pregnancy.
The Best Gift
Congratulations on your baby, Lauren! I am sitting here watching my own chromosomally enhanced, almost-18-year-old daughter dancing up a storm with her Wii game.
I wish I could give you a sense of the pure joy she has been to our family all these years. I was 42 and my husband 44 when she was born. I did not have a prenatal diagnosis, and we were devastated. All I can say is thank goodness I did not have the ability to alter the course of events.
We always say she is the best gift we ever got — one we didn’t even know we needed.
Hopefully you have found Kelle Hampton’s book and blog. Good luck!
— Kathi Pinto, proud mom who aptly named our child Lizzy Joy
Understanding My Purpose
Today I read the article “Gut-Wrenching Choice” (Jan. 20) and couldn’t help but reply. I hope your inbox isn’t too flooded with information for this mother, Lauren Black, who is facing this unimaginable choice.
I wanted to share my story with her, as someone who also faced this life-changing decision.
Over 10 years ago, my husband and I were expecting our first child. At 12 weeks, I had an ultrasound, and they found some abnormalities. After further checking, we were told the baby had a “giant omphalocele,” meaning most of the baby’s internal organs were growing on the outside. We were immediately told we should terminate, and I didn’t even realize that termination for medical reasons existed.
We spent four weeks meeting with genetic counselors, high-risk pediatricians and surgeons and underwent more high-level ultrasounds. At 16 weeks, I made the decision to terminate the pregnancy.
It was hands-down the hardest choice I’ve ever made in my life.
Fast-forward a few years. I had a healthy son and was pregnant with my second child. At our 20-week ultrasound, we were told that the baby was a boy and that he had two markers for Down syndrome (a spot in his heart and one in his bowel). My husband and I opted for an amniocentesis and found that he did not have DS.
Believe it or not, during this time my husband and I both had dreams that we had a daughter, and in both of our dreams she had Down syndrome (this was before our son had the two markers, making it even more unbelievable).
We made the choice to be done with our two children and be grateful that they were healthy.
Four years ago, our third child was born, our daughter. She was diagnosed at birth with Down syndrome. She had no markers in utero, and I even had a negative blood test during pregnancy.
We know that she was meant to be ours all along; we were just scared of what we didn’t understand.
Looking back, I truly believe everything happened how it was supposed to — although I still have gut-wrenching regret wondering “what if” and know this will stay with me for the rest of my life.
I would absolutely be open to talking to this mother as she navigates her choice. I understand completely. I can say that having Ellie has changed my world in more positive ways than I can list. She is my mini-me. She is so smart, funny, beautiful and sassy. She is the apple of her daddy’s and big brother’s eyes.
She is in pre-K and knows her letters, numbers, colors and shapes. She is reading at a first-grade level already. And she loves Taco Bell and hip-hop music.
It sounds cliché, I’m sure, but I was praying and praying to understand what my purpose is in this world, and once my girl was born, it became clear. Since her birth, I have been able to help moms receiving the diagnosis through a nonprofit that provides private, online support groups. These moms forge friendships that are lifelong.
I would be absolutely happy to have Lauren join our private pregnancy group. Knowing you are not alone on this journey is life-changing.
Here is my blog: www.our3lilbirds.blogspot.com. If you watch the video under my latest post, it captures Ellie’s life from birth until now.
And here is info on the nonprofit: www.dsdiagnosisnetwork.org.
Big huge hugs to this mama. I get her, and I hope she can have clarity and peace in whatever decision she ends up making.
— Tiffany Stafford
It’s Your Choice, But a Child Is a Gift
First, congratulations on your pregnancy. So many friends of mine never had the opportunity you have of carrying a life. It’s a wondrous thing.
Yes, you have a choice, as does your husband. You will both be parenting a child who will have challenges. You must be a team, or it won’t work — whatever you decide.
Yes, G-d entrusted you with this child, but you have free will. I always told my husband that, if faced with this choice, I would abort. However, after last year and many personal losses, I no longer feel this way.
A child is a gift, regardless of his abilities or packaging. I am the lucky mother of two daughters with learning challenges. We have faced them head-on and have become stronger and oh-so-much wiser because of them.
Yes, I have cried too many times to count. But the rewards have been so great. My view of life is different. I smile and laugh out loud more. I appreciate the smallest things.
Listen to your heart and trust in your marriage. Courage, humor and patience will be your friends. Faith will be your guiding light.
Whatever your outcome, your true friends will support you when you choose to let them in. Please, count me among them.
I wish I could reach out through my computer keys and wrap you in a hug. You are normal and healthy to be beset by doubts, devastation and sadness. You had dreams, dreams of raising a healthy child who would set out to make his mark on the world.
Now, instead, you may be saddled by myriad medical needs and crises, strapped to a needy being who may never gain independence. Not exactly what you signed up for.
But, Lauren, if G-d is gifting you (and testing you) with a special child, you have another choice. After grieving the loss of your dreams, you can embrace this challenge. Like a mountain climber, you can gear up with the necessary equipment and hike to the crest.
Have you ever seen the scenery at a mountain peak? The indescribable beauty is what propels so many to make the climb.
May G-d bless you, your husband and your unborn child. In the words of the traditional blessing upon a baby’s birth, “May you merit to raise him l’Torah l’chuppah ul’ma’asim tovim (to Torah, to the wedding canopy and to do good deeds).”
— Esther Ostro
Shared Spirit is a column in which people write in to share personal dilemmas. Readers are encouraged to assist by offering meaningful advice.