Common questions we've received

Many people have asked us some really great questions, so I wanted to put some of these questions (plus our answers) out there.  These are just a few of the many questions we have received.  If you ever have any questions at all, please don't hesitate to ask!  I promise you won't offend us, and we're happy to share our journey.

Q: Did you know Alice had Down syndrome when you were pregnant with her?

A: Nope.  Not a clue.  We did not do any prenatal testing.  We chose not to do this for two reasons:

• Of course nothing would be wrong, right?!  We never thought anything would come back as abnormal.  We definitely never even considered that our baby would have Down syndrome.  We're young and healthy.  Those things don't happen to us, right?

• No matter what prenatal testing showed, we would have never aborted.

In addition, I have since learned that prenatal testing only detects Down syndrome about 80% of the time.  The other 20%, women are told that their baby has no abnormalities but is indeed born with Down syndrome (or another condition that wasn't detected through prenatal testing).  I have met many of these women.

When women are pregnant with a baby with Down syndrome, it's oftentimes detected at the 20-week ultrasound.  This is because most babies with Down syndrome have a heart defect, different nasal bridges, more skin behind their necks, short limbs, etc.  These things can be picked up at the 20-week ultrasound.  Alice does not have a heart defect, and nothing was detected as being abnormal on any of her prenatal scans.

Q: So Alice is healthy?

A: Yes!  We are so blessed.  Some people look at me like I'm crazy when I say she's healthy.  But she is!  Her having Down syndrome doesn't make her unhealthy.  Down syndrome is simply a condition that she has.  Her heart is good, her hearing is good and everything else is totally normal.  She's a perfectly healthy baby.

Q: Are your family members or Tim’s family members at an increased risk for having a baby with Down syndrome now?

A: Nope.  The type of Down syndrome that Alice has—Trisomy 21—does not "run in families."  It is not hereditary.  It's a random event that happens at conception.  There is no rhyme or reason for why it happens to certain people and not others.  It's completely random.

Q: Do you want to have more kids?

A: Yes!  We want a big family.

Q: But what if your next baby has Down syndrome?

A: Well... then our next baby has Down syndrome!  If it happened to us again, we would handle it just like we're handling it with Alice.

We’ve actually talked to a few doctors/geneticists about this.  Because Alice’s type of Down syndrome—Trisomy 21—is a random event that sporadically happens at conception and is not anything hereditary or predictable, the chances of us having another baby with Down syndrome would be the same as they were before and the same as any other couple, which is 1 in 700.  One doctor I talked to did say that, because Tim and I already have a baby with Down syndrome, our risk of having another child with Down syndrome is slightly elevated, maybe up to about 1%.

Out of all the moms I’ve talked to in DSACO and other moms who have kids with Down syndrome, none of them have two kids with Down syndrome or know of anyone who has two kids with Down syndrome.  It's incredibly rare.  In fact, I've met a few moms who have twins, and one has Down syndrome and one doesn't.

Q: If you had known Alice had Down syndrome when you were pregnant with her, would you have done anything differently?

A: Yeah.  We would have thanked God for her even sooner.