Hello again from beautiful, sunny Florida! I wanted to share a quick note with you on Isaiah this weekend as so many of you have so thoughtfully reached out to us to see how he was doing.

I’m more than happy to share about Isaiah ANYTIME, but first I wanted to share something that’s been on my heart the past few months, but God’s really convicted me to pray on it the past few days, especially. It’s about the odds.

As Paul and I continue to walk this journey that God has set before us and our sweet son, we are moved by the entire situation. Let me explain.

Based on much internet research via the Global Ds Foundation, the International Down Syndrome Coalition (IDSC), the March of Dimes, the Center for Disease Control and more, note the following…

As a new mom over the age of 35, our baseline chance of having a baby with Down syndrome (Ds) is about 1 in 200. Paul and I decided to have the Ds screening tests done, a process done over several months including several tests and multiple ultrasounds, and while I don’t have the exact number in front of me, based on the first screening tests, our risk for having a baby with Ds was determined to be about 1 in over 2000. During the second round of tests, they found a slight abnormality on Isaiah’s ultrasound, a slight thickening in one of four ligaments in his heart, which they explained increased our risk slightly to 1 in about 1600 (I will try to get the exact numbers from the doctors in the coming weeks). They explained to us that this ligament thickening used to be a slight marker for Ds in utero (about 30 years ago) but with all the additional tests available now, while it slightly increased our risk, because all of the other tests were negative it was not a concern enough to suggest an amniocentesis was necessary (amnios carry a risk of miscarriage so we wouldn’t have done it anyway). Any results with a risk lower than 1 in 200 is considered a negative screen and all of our other screening tests came back perfectly normal. Lower than 1 in 1600. That’s less than 0.06%. Against the odds, God had bigger plans for Isaiah.

Next, research estimates 80% of all embryos or developing fetuses with Down syndrome never fully develop and end in miscarriage. Against the odds, God had bigger plans for Isaiah.

It continues… prenatal analysis detects Ds in more than 99% of cases, and while rare, a false negative is possible because a baby can have an extra copy of chromosome 21 in only some cells – this is Mosaic Down syndrome. Less than 1% of false negatives. Against the odds, God had bigger plans for Isaiah.

Out of the more than 3.9 million babies born in the US each year, only about 6,000 are born with Down syndrome. That’s less than 0.15%. Against the odds, God had bigger plans for Isaiah.

Upon birth, almost half of babies born with Ds suffer from heart defects. Not Isaiah. Against the odds, God had bigger plans for Isaiah.

In fact, there are more than 50 features of Down syndrome. Not every person with Down syndrome has all the same features or health problems. Some features and problems are common. Below are just a few.

• Choroid plexus cysts (CPC) — a fluid-filled space in the brain, which is totally harmless
• “Sandal gap” toes — a larger-than-usual gap between the first and second toes
• Renal pyelectasis — a condition in which an area of a kidney is enlarged
• Clinodactyly — a pinky finger that curves slightly toward the ring finger
  • Nuchal-fold thickening — the area at the back of a baby’s neck is called the nuchal fold; when more fluid has accumulated there, it will appear thicker on the ultrasound.
  • Duodenal atresia — a condition in which the passage from the stomach to the small intestine hasn’t opened
  • Cardiac anomalies — a condition in which the heart or vessels around it have developed abnormally
  • Hyperechogenic bowel — a condition in which the area around the pelvis appears brighter than normal on the ultrasound, perhaps because of a mass or an infection
    • Echogenic intraventricular focus (EIF) — a bright spot on the baby’s heart, which could come from calcium deposits
    • A femur or humerus length below the fifth percentile — a shorter-than-normal thigh or arm bone
    • Pleural effusion — excess fluid in the chest cavity, which can affect the development of the heart and lungs
  • Isaiah does not have a single one of these markers. Not one. His tests absolutely show that he has an extra chromosome, he does have three Chromosome #21s vs the typical 2, one we lovingly refer to as “Chromie”. He does have the Simean crease in both hands, a single line that runs across the palm of the hand. These are his markers. Against the odds, God had bigger plans for Isaiah.

    He is a rock star in Physical Therapy. He is mastering all the goals. His therapist told us this week that he is the most advanced baby with Down syndrome at his age that she has ever worked with. She’s only ever worked with one other patient with Mosaic Down syndrome, which is not terribly surprising given that mosaicism is only present in about 2% of all people with Down syndrome. Against the odds, God has bigger plans for Isaiah.

    We have done a bunch of research on Down syndrome, as you can imagine. Most alarmingly, the International Down Syndrome Coalition reports that termination rates in the US alone following a prenatal diagnosis of Ds are somewhere between 70-90%. I don’t even really have words to express how sad this makes me.

    While we don’t know what God will bring our way in the coming weeks, months and years, we are absolutely certain of this… Jeremiah 29:11 assures us that God’s plans for us are predetermined. Those plans, HIS plans, are designed to give us hope, a future. They’re for our best. And because of that, we know this…