...And Baby Makes Four
Yep, you read that right. Sienna gets a little sister this summer!
I thought a post on how we got here may be helpful to others that find themselves in a similar situation. One that makes you question the family you saw yourself having. One that makes an otherwise (relatively) easy decision, an extremely difficult one. Before we ever determined what road we would go down, I posted my thoughts on expanding our family.
For us, the decision to have another natural child was tough. But it felt like the right one. IVF w/ PGD and adoption just didn't resonate with us at this time. Once we decided that this was the path we were going to take though, I was pretty scared. Scared that it wasn't the right choice. Scared of what the outcome would be. We weren't looking to get pregnant just yet, so I started to second guess our decision daily and it became a constant source of anxiety for me. We finally just committed to the decision and decided it was time...and here comes baby sis!
- - -
Now for the questions you may all be wondering but are too polite to ask -
1) Have we done in utero testing to see if little sis has CF? No. I honestly thought the anxiety and stress of not knowing would weigh on my shoulders during pregnancy, but it hasn't. Not one bit. Maybe I'm just not ready to know. I've spent more time dreaming about what she'll be like - dramatic, funny, and active like her big sis? Mellow and obedient? (Ha! Probably not our child!). I've barely thought about the possibility of CF at all (okay...it crosses my mind every once in a while).
Our only options for in utero testing are/were a CVS (chorionic villus sampling) or amniocentesis - both run a small risk of miscarriage. To us, the risk of miscarriage was more important than knowing baby girl's CF status. There are only two factors that would have changed our mind about testing in utero:
Plus one advantage for NOT finding out, is that we can hopefully secure life insurance for baby girl before any diagnostic testing comes back. Unfortunately, Sienna was denied when we shared her diagnosis with Gerber.
2) When will we know if baby girl has CF or not? It will likely take 3 to 4 weeks like it did with Sienna. We already know what mutations are at risk of being passed down, but only one is included in the newborn screening. If that comes back positive, it means baby girl carries the common gene, DF508, but it will not disclose if she also has the rare variant, Exdup22. Just like with Sienna, we will then need to schedule a follow up sweat test. The results of a sweat test only take a day, so we will know shortly after that test. I believe we can expedite results if we immediately send a blood sample to Ambry lab - the company that does a full genetic panel of all 1,600 + mutations - and they would look only for the DF508 and Exdup22 mutations. I don't see much value in an expedited diagnosis though. We started Sienna's CF care around 5 weeks old, and that seems early enough to be ahead of the game.
3) What happens if baby girl has CF like big sis? We will love her just the same! While we hope baby girl does not have CF, there can be some benefits to siblings with CF. The bond will be one of a kind. They will always have each other who can truly relate to how they feel, and what they are going through.
With the strict cross contamination regulations around patients with CF, it can be a pretty lonely disease. It is recommended that people with CF keep a 6 ft distance from each other, so even charity events raising money for CF treatments/research generally don't allow CF patients to attend. It stinks. With siblings, that rule goes away, because you can't live like that.
4) Does another child with CF pose a risk to Sienna's health? It shouldn't. But it is a real concern I have. While there are cross contamination rules for a reason, it seems that the experience of other families with multiple CF children don't see one's health impacting the other's health. That means if one is sick, it doesn't automatically mean the other one will be too. If one is culturing a nasty bacteria, it doesn't mean the other one will too. As long as we enforce rules like no cup/utensil sharing, good hand washing habits, and treatments done apart once they are older and having productive cough sessions, they should be fine.
And that's all I have on the CF front. We will enjoy the next few months of pregnancy and see what happens after baby girl joins our family this summer.
- - -
I wanted to share one other (fairly personal) bit of information. While baby girl looked great at the 20 week mark, we did find out there is an umbilical cord defect. Instead of a normal 3 vessel cord, we have a 2 vessel cord - meaning one of the arteries is missing. Majority of the cases of SUA go on to have perfectly healthy pregnancies and babies. I'll add that we have no other soft markers for chromosomal defects, which increases the chance that this is a solo issue we are dealing with. We will just have extra monitoring starting at 30 weeks, watching her growth closely.
The only reason I'm sharing this...and I was hesitant to...is to drive home the point that anything can happen. There are SO MANY unknown complications in pregnancy, during birth, and after. Nothing is guaranteed. So while we hope for no CF, our eyes are once again opened to the world of things that exist that you never knew about or even thought about dealing with.
Please keep our family in your thoughts and send good, healthy vibes our way!
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| Little firecracker expected on or around 4th of July |
I thought a post on how we got here may be helpful to others that find themselves in a similar situation. One that makes you question the family you saw yourself having. One that makes an otherwise (relatively) easy decision, an extremely difficult one. Before we ever determined what road we would go down, I posted my thoughts on expanding our family.
For us, the decision to have another natural child was tough. But it felt like the right one. IVF w/ PGD and adoption just didn't resonate with us at this time. Once we decided that this was the path we were going to take though, I was pretty scared. Scared that it wasn't the right choice. Scared of what the outcome would be. We weren't looking to get pregnant just yet, so I started to second guess our decision daily and it became a constant source of anxiety for me. We finally just committed to the decision and decided it was time...and here comes baby sis!
- - -
Now for the questions you may all be wondering but are too polite to ask -
1) Have we done in utero testing to see if little sis has CF? No. I honestly thought the anxiety and stress of not knowing would weigh on my shoulders during pregnancy, but it hasn't. Not one bit. Maybe I'm just not ready to know. I've spent more time dreaming about what she'll be like - dramatic, funny, and active like her big sis? Mellow and obedient? (Ha! Probably not our child!). I've barely thought about the possibility of CF at all (okay...it crosses my mind every once in a while).
Our only options for in utero testing are/were a CVS (chorionic villus sampling) or amniocentesis - both run a small risk of miscarriage. To us, the risk of miscarriage was more important than knowing baby girl's CF status. There are only two factors that would have changed our mind about testing in utero:
- If our hospital wasn't equipped to care for a baby with CF (such as surgery for a blockage), then we would need to consider delivering at a different hospital. Luckily, our hospital has a level 4 NICU, so if care was needed immediately they are equipped to handle it.
- If immediate intervention/care was needed, such as needing enzymes or breathing treatments. Starting CF infants on enzymes so they are able to gain weight and not fall into the failure to thrive category is important for those that are pancreas insufficient. But thanks to Sienna, we know our mutation combo likely equals pancreatic sufficiency and enzymes will not be necessary for healthy growth. Because of this, we are confident that starting general care/monitoring a few weeks after birth will not impact baby girl's health in any way.
Plus one advantage for NOT finding out, is that we can hopefully secure life insurance for baby girl before any diagnostic testing comes back. Unfortunately, Sienna was denied when we shared her diagnosis with Gerber.
2) When will we know if baby girl has CF or not? It will likely take 3 to 4 weeks like it did with Sienna. We already know what mutations are at risk of being passed down, but only one is included in the newborn screening. If that comes back positive, it means baby girl carries the common gene, DF508, but it will not disclose if she also has the rare variant, Exdup22. Just like with Sienna, we will then need to schedule a follow up sweat test. The results of a sweat test only take a day, so we will know shortly after that test. I believe we can expedite results if we immediately send a blood sample to Ambry lab - the company that does a full genetic panel of all 1,600 + mutations - and they would look only for the DF508 and Exdup22 mutations. I don't see much value in an expedited diagnosis though. We started Sienna's CF care around 5 weeks old, and that seems early enough to be ahead of the game.
3) What happens if baby girl has CF like big sis? We will love her just the same! While we hope baby girl does not have CF, there can be some benefits to siblings with CF. The bond will be one of a kind. They will always have each other who can truly relate to how they feel, and what they are going through.
With the strict cross contamination regulations around patients with CF, it can be a pretty lonely disease. It is recommended that people with CF keep a 6 ft distance from each other, so even charity events raising money for CF treatments/research generally don't allow CF patients to attend. It stinks. With siblings, that rule goes away, because you can't live like that.
4) Does another child with CF pose a risk to Sienna's health? It shouldn't. But it is a real concern I have. While there are cross contamination rules for a reason, it seems that the experience of other families with multiple CF children don't see one's health impacting the other's health. That means if one is sick, it doesn't automatically mean the other one will be too. If one is culturing a nasty bacteria, it doesn't mean the other one will too. As long as we enforce rules like no cup/utensil sharing, good hand washing habits, and treatments done apart once they are older and having productive cough sessions, they should be fine.
And that's all I have on the CF front. We will enjoy the next few months of pregnancy and see what happens after baby girl joins our family this summer.
- - -
I wanted to share one other (fairly personal) bit of information. While baby girl looked great at the 20 week mark, we did find out there is an umbilical cord defect. Instead of a normal 3 vessel cord, we have a 2 vessel cord - meaning one of the arteries is missing. Majority of the cases of SUA go on to have perfectly healthy pregnancies and babies. I'll add that we have no other soft markers for chromosomal defects, which increases the chance that this is a solo issue we are dealing with. We will just have extra monitoring starting at 30 weeks, watching her growth closely.
The only reason I'm sharing this...and I was hesitant to...is to drive home the point that anything can happen. There are SO MANY unknown complications in pregnancy, during birth, and after. Nothing is guaranteed. So while we hope for no CF, our eyes are once again opened to the world of things that exist that you never knew about or even thought about dealing with.
Please keep our family in your thoughts and send good, healthy vibes our way!
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