From Blindsided to Beyond Blessed {Birth Defects Prevention Month}

“Your baby has a birth defect.”  Words no mother should ever have to hear.  Yet there I was at a measuring ultrasound, with a new doctor who specialized in ultrasounds because my regular OBGYN happened to be booked solid and the measuring issue was apparently pertinent. I was alone, anticipating hearing the sound of my beautiful babies’ heartbeat and leaving with a healthy report just like I did the times previous. Instead, I encountered a very young, very nervous ultra sound tech who gave me my first glimpse of something not being quite right with her silence and inability to make eye contact with me while ignoring the questions I asked. She told me the doctor would be right in, so after what seemed to last an eternity, the doctor came in followed by a random woman who was dressed in plain clothes without any identification.  Neither of them making a comfortable eye contact with me either.  My suspicions were confirmed and I immediately felt like I had just been punched in the gut.

From Blindsided to Beyond Blessed {Birth Defects Prevention Month} | Duluth Moms Blog{ Photo Credit: Wendy Otterness Photography }

The doctor sat down and started to look at the ultrasound.  I just remember her stoic manner, squinting at the screen and all the clicking of the mouse. And then as if it was the most casual conversation in the world she turned to me and said.  “Brandi, your daughter has a shorter right arm with only two digits present.” Then focused her attention back to the ultrasound acting as if what she just told me wasn’t completely devastating to hear at the time not to mention a complete shock.  I immediately started to sob and shake but was offered no support except for the strange woman who had made her way over to me.  My first thoughts were of the struggles she would endure with a physical defect in a world where physical differences are not normal therefore they are a “thing.” A “thing” people can be so unforgiving about and ugly towards. As her mama I wasn’t concerned about the appearance one bit but was I going to be able to protect her like she needs?  Just as I started to get my bearings back the Dr. said, “And Brandi, most of the time, in limb differences, there are other syndromes or defects accompanied by it including cleft palate, clubbed feet, kidney defects and always usually a heart defect.”

You know how you hear people say “I feel like I was in a bad dream?” Those feelings are legit. That’s exactly what I felt in that moment hoping to awake in my comfy bed. I should have let my husband come with me, I thought, but it was just a silly measuring appointment to see if everything was growing according to the week they thought I was, so I told him not to miss work.  I needed him.  I needed my strong supportive husband but I was all alone.  After almost fainting at the new potential diagnosis and having to be held up by the random lady, immediate guilt hit me.  “What did I do?!  What did I do to cause this to my baby?!” I cried. Things started going through my brain. Not enough folic acid. I wasn’t careful enough. Both my pregnancies were awful. I suffered from Hyperemesis Gravidarum (excessive vomiting the whole pregnancy) and Cholestasis (intense itching from 3 months on and a condition where baby can be born still.) Not once did I take the medications they said I should take with the second pregnancy, Zofran and a steroid because they didn’t work with the first one. I did take a antihistamine blocker later in my pregnancy because it was considered a “safe” drug in pregnancy and highly recommended by my OBYGN to try to stop the itch and get some sleep.

And then I said through tears, “I should have been more cautious.” And the once stone faced doctor turned human, grabbed my hand, her voice got a little softer and she said,  “Brandi, don’t you dare, for one second, think you had any control over this or caused this in any way by what you did or didn’t do.  You are not to blame for this, so please, I beg you, don’t take this guilt on.  It is not yours to bear.” She went on to tell me how the hands form very very early on in pregnancy.  Sometimes before we even know we are pregnant, right around the 5-7 week mark.  Sometimes it can be lack of blood flow to the arm and hand or some other problematic tissue issue. Whatever happened wasn’t my fault. She saved me with those words.

Finally the kind woman introduced herself as a grief counselor and also wanted to know about genetics, so she led me into a different room, wobbly, swollen, black mascara filled eyes and snot nosed in front of what seemed to be the whole hospital staff.  There I endured an endless amount of questions about my family history and husband’s family history and I thought ‘what a crappy time to do this.’  I said, I am sorry but I have to do this a different time, got up and walked out still weak in the knees.  I remember walking through the waiting room of happy expecting mothers and wondering if they were going to experience the same fate as me or were their babies going to be born healthy and perfect.  I got into the elevator and just started to sob again, not knowing there was an old woman in the corner.  She grabbed me and said, “What’s wrong honey?” I fell into her.  I hugged her, she hugged me, and I put my head on her shoulder, even though she was five inches shorter than me and just cried.  The doors opened and I broke away from her and said, “Just a bad doctor. visit.” She put her hand on my belly and said, “You and that baby are going to be just fine dear.  I promise.”  7 years later and I still think about her and how her kind words were just what I needed in that moment.

I walked to my car and was dreading calling my husband and you know when you drive and you are daydreaming so much you don’t know how you made it from A to B?  Well that was my car ride home. I was a wreck.  I called my husband and through tears told him to come home.  I got to my house and sat in my car because I didn’t know how I was going to face my 2 year old daughter and my mother-in-law who was watching her.  Finally after getting pulling myself together, I walked in.  Took one look at my beautiful two-year-old girl and started bawling again.  My godsend of a mother-in-law grabbed me and sat me down and through tears I told her the news and she just hugged me so tight and said, “None of this matters.  She’s already so loved now, nothing will change.  She will amaze us all, you’ll see.” And my daughter hopped up on my lap and kept wiping away my tears, saying, “It’s ok mama.” My 2 year old was consoling me. I look back on that and remember thinking of how lucky I was to have her and how she was going to make an amazing big sister.

My husband handled the news way better than me.  But maybe he put up a front, because his wife was a wreck. He said, “I will be here every step of the way with you honey, we will get through this together as a family.”  But little did we know he was about to get deployed for a training for the next 6 months. He insisted on missing it but it was crucial for our family’s future that he went, so the day after Christmas, my little girl and I saw him off.

At my 20 week ultrasound there was nothing new on the ultrasound except for the fact that I knew my little human I was brewing was a girl! I was so excited because I love the bond my sister and I share and I wanted that for my girls! I asked the doctor what the next steps were and she said I would just have to sit and wait unless I wanted an amnio to get a better picture of what I was dealing with. I didn’t. It didn’t matter anyway. She was so loved and whatever happened we would face it head on. I did meet with the pediatric orthopedic surgeon shortly after and he delivered some more tough news. Typically, since my girl didn’t have an ulna bone her hand would be deemed “useless” and most likely would be amputated. That was another hard pill to swallow and the days to follow were brutal.  All I could do was pray that it was just my babies arm and hand and a healthy heart.  For 5 months, that’s all I could do.  That mixed with the puking, itching, and no sleep, I started to feel like I was going to lose it so we went to stay with my mom.  My family was so supportive, I cry thinking of how my mom and stepdad both embraced me at the same time when I broke the news reassuring me everything was going to be all right.  It was the best hug I ever got.  I remember my sister’s phone call, sending me love and support and my brother saying, “It’s just a hand Bran. No biggie.” My other little brother reassuring me that everything was going to be fine and my dad crying and telling me how much he loved her already and how he couldn’t wait to meet her. Everybody was so amazing and supportive and the day I went into labor my mom and sister were right there every step of the way. On February 7th, 2011 at 3:24 pm I gave birth to a beautiful 7 fingered perfect little girl. Her hand was adorable to me and the thought of taking it away saddened me so much. Everyone gushed over her like they do with new babies and her big sister was so proud to have her. My family even pulled a fast one on me and handed me the phone with my husband on the other end congratulating me from afar wishing he could be there with me and then said, “Wait I can!” And came walking through the hospital door!!! Not a dry eye in the house including the nurses who were in on the trick!  My dad had driven up to the airport to get him and he was able to spend a few days with his 3 girls!

Our first visit to Shriners at three months old, couldn’t have gone any better. After X-rays, the amazing doctor told us, surprisingly, enough of her ulna bone grew to make it viable to use her hand and her two little fingers! Perfect kidneys and perfect heart!️️️️️

From Blindsided to Beyond Blessed {Birth Defects Prevention Month} | Duluth Moms Blog{ Photo Credit: Wendy Otterness Photography }

Almost 7 years later and this child of mine has made me a better mom, sister, daughter, wife, and friend. She has taught me how to go after what I want, to ignore the naysayers. She has taught me tenacity and has given me strength. She is brave, kind, empathetic, and a go-getter! She is in dance, karate, Girl Scouts, soccer, and loves to shoot hoops. She rock climbs, skates, and skis.  She is active in this amazing organization called the Lucky Fin Project where she is able to see and make friends with kiddos just like her and get inspiration from teens and adults who also are killin’ it with all kind of limb differences!! She’s an amazing artist and a real life children’s book illustrator. She has an amazing group of genuine friends, loves school, and a is daddy’s girl, although you will find her snuggling with me at all times.

In the dictionary the word “defect” means flawed, imperfect, weak.” But when I look at her all I see is strong, flawless, and perfect and most importantly that is how she sees herself!  It is my job as my girls’ mother to build their confidence so high, nobody can tear it down.  Mattea knows that her limb difference doesn’t define her anymore than the color of her eyes.  It is part of her, but not all of her and we don’t focus on what is missing but instead what is there!

January is National Birth Defect Prevention month. According to the CDC, 1 in 33 births are affected with birth defects. Read on to learn more about what support is offered and preventative measures to take while pregnant. https://www.nbdpn.org/bdpm.php

4 Responses to From Blindsided to Beyond Blessed {Birth Defects Prevention Month}

  1. Kathleen February 8, 2018 at 1:05 pm #

    Incredible! What a beautiful story, Brandi. Thank you for sharing your amazing story. God bless you and your sweet family.

    • Brandi
      Brandi February 11, 2018 at 4:42 pm #

      Thank you so much Kathleen, that genuinely means a lot!

  2. Leigh Smith February 9, 2018 at 6:42 pm #

    I have a male friend my age (40 something) who has this exact birth defect. He’s amazing. When he married and started having children, the genetic questions all came up again. But, his children have no birth defects. I know he has certainly dealt with questions and issues about his hand, but it really doesn’t seem to affect him. He’s living a really great awesome, active life.

    • Brandi
      Brandi February 11, 2018 at 4:44 pm #

      Awesome to hear! Yes, there is nothing Mattea can’t do and she loves that she is unique! Thank you for taking the time to comment Leigh!

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