She’s Fine

Making the decision to have another baby was easy. My husband & I knew we wanted another baby even before our first was born. It was after Jax was diagnosed with CF that my mind became unsure. You can read about Jax’s diagnoses here. The chances of having another child are pretty big. There is a 25% chance of having a child with CF, a 50% chance that the child will be a carrier, & a 25% chance that the child with be neither.

 

 The thought of having another baby with CF made me cringe. Could I go through that again? What if this baby was born with a more severe strand than Jax? Could I watch TWO children of mine suffer? Could we afford the medical bills?

My desire to give birth was there, however the mom in me was there, too. I already had one small child that I have had to watch go in & out of the hospital multiple times. I didn’t know if I had it in me.

I prayed on this a lot. I prayed for guidance & direction. It felt selfish in a way to have another baby knowing there was a chance that it would be born to a life of hospital stays, medications, & surgeries. Putting my need to have another knowing the odds felt selfish.

Slowly my heart began to change. My husband & I talked about it so many times. His mind was set on “This time we know what to do & expect. We won’t be caught off-guard like last time. We got this”. I started to believe this, too. God trusted us with such a fragile boy once. If we were deserving, He would trust us again. If we were to give up our desire to have another, we would be giving in to defeat. This baby could be born with one of many health defects, not just CF. It’s unfortunate, but it’s something that cannot be helped. That didn’t mean we should give up our hopes for a  big family, though.

Soon after we started trying, we were pregnant again. I thought about that 75% chance of this baby having CF or the gene. I wanted it to have neither. Being a carrier means you don’t have CF, but you have the gene. I am a carrier & so is my husband. 12 million people in the US are carriers. About 2500 babies are born with CF each year. That’s not a lot of babies, but taking that chance weighed heavily on my mind.

Elliot was born April of 2011. On the holiest of days: Easter Sunday.  In Louisiana, CF is detected by the newborn screening test, also known as the PKU test. It takes about a week to get the results. With Jax, we got the news when he was 8 days (at approximately 4 pm. I remember it clearly.) The morning that the nurse came to take Elliot to do her hearing test & the PKU, I was a mess. Could she have it? She was born at 8 lbs, which was a good sign. Jax was born at 6. Most babies with CF are born on the small side, because of nutrition issues. There was still that chance, though…..

The next week was a blur of newborn cries, my nephew born the day after we came home, & that question everyone seemed to ask us: Have you heard anything? Everyday our phone was silent & I became more worried. I monitored her poop like it was my job. CF babies have distinctive BM’s. Sometimes she had them, other times she didn’t. I emailed her Pediatrician regulary. Is this normal? She did this….is it CF related? I was driving myself crazy.

Finally on a Thursday my phone rang. This was it. This will determine the direction of my new baby girls life. My Pediatrician simply said “She’s fine.” Elliot didn’t have CF & she wasn’t a carrier. I couldn’t believe it. A HEALTHY baby.

We are still so thankful that Elliot is healthy. It’s something parent’s can take for granted. Now all of the focus can be on Jax’s health & well-being. Will we have another? We want to. I will worry just like I did with Elliot, there is no doubt. Only the next time I will know that there is a chance of having a healthy baby, not just a chance that we won’t.

No Comments

  1. Risa -  March 18, 2012 - 11:38 am

    This is beautiful. I cried. You are such a strong and beautiful soul Misty. Your babies are so blessed to have a wonderful mother.

  2. Amanda perry -  March 18, 2012 - 2:28 pm

    This made me bawl, so thankful for my healthy babies. You’re right, its a fact i often take for granted. You’re such a strong woman.

  3. Brittany -  March 19, 2012 - 1:13 pm

    God pleased you with two amazing childern, he know only the best can take care of childern with extra needs.

  4. Chasity Monschein -  April 8, 2012 - 9:32 pm

    God places special needs children into special homes. It is a blessing that you and your husband were so accepting of your special needs child and love it regardless. My cousin has DS and I’ve never met a sweeter, more kind child in my life.
    I’m happy that the baby situation worked out for you. I don’t think I could have taken those risks, though. My husband and I were both genetically tested before we had a child (we’re both adopted, and I didn’t want us to be unknown carriers). Huntington’s Disease runs in my adopted family, and I’ve seen how crippling genetic diseases can be.
    But you put your faith in God and it worked out for you. That is truly a blessing.

  5. Julia -  October 7, 2012 - 6:37 pm

    Thank you for posting this. I had a heart baby last year and lost him this year, and our other son had laryngomalacia and pectus excavatum. None of them are definitively genetically related (actually they say having a heart baby doesn’t increase your odds of having another baby with issues, nor does laryngomalacia)… but anyhow… the fear in me of having another child with issues is crippling, but I want another baby so badly too… It’s a war in my heart and head.

    This really helped… and I so appreciate you sharing your story.

Leave comment

You must be logged in to post a comment.