Rare Disease Day: Why I Quit Saying “As Long As He’s Healthy”

When you announce you’re pregnant there are certain conversations you can expect to have multiple times. The main one starts with the question “Do you want a boy or a girl?” That always seemed like a silly question to me since you don’t get to decide. But moving beyond that. After you’ve either expressed a gender preference or said you don’t care someone- either the expectant parent or the other person- almost always says, “As long as she’s healthy.” Everyone smiles, agrees that’s most important, and moves on. 


But what happens when the baby isn’t healthy? I always want to stop the person and say, “What if he’s not? What then? You going to send him back?” It also seems like a ridiculous statement (that I’ve been guilty of saying) because you can’t do anything about it. If your baby is not healthy, you have an unhealthy baby. He’s still your baby. 

No one expects to have something wrong with their baby. Our first was born and appeared perfect. We were thrilled and took him home. But he wasn’t healthy. He almost died multiple times from a rare disease that we had never heard of. 

I wouldn’t trade our boy for any other kid, healthy or not. 

The point isn’t that your baby is healthy, although who wouldn’t prefer that? The point is that it’s your baby. When you got pregnant you signed on. This is your child, come what may. Being a parent grows you up. That’s how it’s supposed to work. You need to grow up when you become a parent. 

A month in the nicu and looking forward to a life of rare disease will do that. You’ll grow up because you have to. You’ll learn to measure formula, change g-tubes, and argue with the insurance company. You’ll see the inside of a doctor’s office more than the average family. You’ll avoid those germs and skip the anti-vaccination arguments because the consequences can be so serious.  

You’ll be better because of it. You’ll deal with the setbacks, the unexpected, the delays. You’ll discuss your child with doctors and guard him fiercely from people who don’t understand. You’ll give in to fear sometimes and then you’ll get back up. 

You’ll quit saying, “As long as he’s healthy” to expecting parents. 

We’ve had two more children, both boys, since our first was born with IVA. With a genetic disorder there’s a 25% chance with each pregnancy that the baby will have IVA. This means we have an amnio. This means we have a late amnio in case of complications.  This means we hope and pray I don’t have the baby before we get amnio results back.  So far no one has asked, although I’m sure some have wondered, why we had more babies. Here’s my answer: no one is guaranteed a healthy baby. It doesn’t matter if you are carriers of IVA or not. 

We love our boys. Even if they’re not healthy. 

2 Comments

  1. Good post, Lisa. My cousin and her husband lost a baby to IA 14 years ago. They had no idea that such a disease existed , much less that they are both carriers. It was a very dark time for them…losing the baby when he was 4 weeks old, plus knowing that future children may be affected. But they have since had 3 more children: 2 boys and 1 girl. Only one of the boys has IA and the daughter does not. They have learned so much – because they have HAD to. Their son who has IA is doing very well with a strict diet and meds.
    Thanks for sharing with us.
    May the Lord richly bless you and yours. 🙂

  2. I can't imagine doing this in the past- even the not-so-distant past. I'm glad their son is doing well now. God's best to them! And you too 🙂

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