Matthias, You Make Me Better

I fell in love with Holland. I had not read this poem (Welcome to Holland by Emily Perl Kingsley) since college and as I reread it on the morning of March 21st and now as October approaches, I cried. Not because of sadness, but of the truth I felt reading it. Although I agree with most of this poem, in my heart the sadness is not forever, and I am so grateful for that!

At 20 weeks pregnant I had to visit a maternal fetal specialist due to my “geriatric pregnancy” at the age of 38. I had been before with my first at 36 years old. So, I knew the drill. This time was different. This time my world was turned upside down. My story changed. My family’s story changed.

Here is how the story goes. The ultrasound technician began and everything, as she put it, was “looking great”. Now it was time for the nuchal translucency scan. As a pediatric physician, I know what the nuchal translucency scan is for. The weight it can bear on a mother. The fear it is made to instill in you. This simple yet scary test assesses the risk for Down syndrome and other genetic “problems” as doctors like to explain it.

So here it went. She performed the measurement of my baby’s neck. I can still remember the look on the ultrasound technicians face as she measured my baby. The dread she displayed. The grimace. She GRIMACED! When she stated she needed to make sure the doctor was happy with all the images, I knew.

After a full 20 minutes of waiting and being left alone with all the scenarios running through my head, the doctor entered the room. The first words she expressed were “I am sorry”. Not “Congratulations on your beautiful baby!” Not “Sorry for the wait”. Not “How are you feeling?”.  No, it was “I am sorry.” That is when the endless “I’m sorries” began, and the frequent “suggestions” for termination swallowed me. A few weeks later I underwent an amniocentesis and a few weeks after that two things were confirmed. One, we were having a baby boy! And two, he did in fact have Down syndrome. But my faith took over and God was once again my rock!

Now, as I reflect on this moment and the stressful months that followed, I could not imagine my world without Matthias. His sister, Leah, is obsessed and in love. She is a fierce protector, cheerleader, motivator, and his forever best friend. She is the sassy, beyond caring blessing we needed for our hearts and for her brother.

I know everyone’s journey looks different and their hearts may not feel like ours. I see those families and I pray for their journey. I pray that they may heal and find joy in their unexpected trip to Holland.

It has been 11 months with our little angel and he has surpassed all stereotypes and expectations!

Leah Ariel our “Lion of God” and Matthias Alberto our “Gift from God” are the most exciting adventures, and they are only just beginning! Matthias is our Holland and although the roads to get there are sometimes bumpy, the view is always glorious!

On May 9th, Matthias underwent open heart surgery. He did not get the memo that he is a cardiac patient! He smashed his recovery and is so strong!

I hope his story inspires even just one person to see the possibilities and beauty within this diagnosis!

-Leah, Matthias’ Mom

(Florida)