Yesterday at my doctor's appointment I asked for the results from our integrated screening. She didn't have them but I knew they'd been completed so her nurse was able to pull them off of the computer network. My doctor was handed several pages and started interpreting the results. I could tell she was a little surprised. She walked me through the results and just by having Porter we had a 1% risk for Down Syndrome, but with the screening and ultrasound the percentage still increased. We're looking at a 1 in 70ish chance of this baby having Down Syndrome. Now those are pretty good chances. I bet each of us knows someone who's had a typical child with those statistics but this is extremely abnormal for someone my age (25). It's a red flag. These numbers puts us into the category where an amniocentesis is highly encouraged. Here we reach the decision part:
- The only information we'd get from an Amnio is yes or no, your baby has Down Syndrome. We wouldn't know if the baby has a heart problem, or weak muscles, or this list goes on and on!
- I would never forgive myself if we miscarry because we have this procedure done. I know that this risk is very low and it's even lower with the doctor who would be doing the amnio on me -- her stats are 1 miscarriage out of 1000. But I can't help but think about that 1.
- I'm wondering if by having the amnio if my pregnancy would be treated differently looking for problems, etc.
- If you haven't read my blog before you should know we'd never consider terminating a pregnancy for a genetic abnormality.
We're still processing all of this. It hasn't even been 24 hours yet so we haven't reached any decisions yet. On the way home from my doctor's appointment I started crying. I had been completely calm when she told me the results, she was extremely concerned about me and was just waiting for a breakdown. I was completely together when I called Aaron. I lost it when I called my parents. Mom does this to me for some reason; she's my safest childhood place, I think the little girl in me comes out when Mommy gets involved. As I was crying I kept telling myself to buck up and that this wasn't a big deal. I finally cut myself a break and realized that yes, this is a big deal. There's going to be a lot of emotions here: they've told me I could have a second child with Down Syndrome and wow that changes things. Either way, I'm going to be disappointed and overjoyed, no matter the results! This is going to be emotional and if I don't face that I'm not going to be emotionally healthy enough to welcome any child. Aaron and I know that if we're having a second child with Down Syndrome we probably won't have any more of our own because while it's rare there are parents who are balanced carriers of an extra chromosome. There is also the possibility of lightening hitting the same place twice, but it's not likely. We'd gratefully welcome this child if he/she has Down Syndrome but having 2 children with extra health, financial, physical, and emotional needs is a lot of responsibility.
We know whatever the outcome we'll be happy, we'll be blessed, the Lord will help us through it and one thing we know for sure...
We trust God!
p.s. This is a bit easier just because we sure do love our little boy with Down Syndrome! Just holding Porter makes me feel that everything no matter what is going to be okay.
We trust God!
p.s. This is a bit easier just because we sure do love our little boy with Down Syndrome! Just holding Porter makes me feel that everything no matter what is going to be okay.
13 comments:
I told you about my scare with Griffin. He had anormal kidneys that could have been an indication of Ds. We couldn't find out exactly what was wrong with his kidney until he was born. That was when we learned he only had one kidney. The other one never got adequate blood flow to form. Not a marker for Ds. I chose not to do the amnio because I had just lost a baby at 20 weeks 4 months before getting pregnant with Griffin. Knowledge wasn't worth the risk of losing that baby I had waited so long to have. Morgan was almost 4 years old. One thing I did consider though was having the amnio around 30 weeks (if it did induce labor the baby would be much older and could survive) and then I would be emotionally prepared either way at delivery. I wish I would've chosen that option. If you remember, I was sure Griffin had Cri du Chat syndrome when he was born and had a really difficult first week until I got the chromosome results that everything was normal. It is such a personal decision. The only reason I ever wanted any testing done in my two subsequent pregnancies after Morgan was to know that everything was fine. To be reassured. I don't know how it would have been if the results weren't reassuring. Did you do the first trimester screening? The nuchal fold measurement, nasal bone measurement and blood work? That test is more accurate than the quad screen done in the second trimester. You are in my thoughts and prayers. I am really sorry you have to thinking about this during this pregnancy. Let me know if there's anything I can do tell help.
Had the same results with Lila. We didn't have an amnio. At the next ultra sound they can give you better odds based on the babies measurements. After the ultra sound we were at 1 in 100 chance. My Dr here recommended we abort (obviously out of the question) to think with his "expert" opinion we would have aborted a beautiful healthy baby girl. Personally I would wait, not have the amnio. Measurements seem to be more accurate.
Good luck, our prayers are with you!
Kelli
I am sorry you are going through this especially when you are already emotional from being pregnant. I never got any of the test done with my kids. My half brother supposedly had trisomy 18 and wasn't suppose to live. my step mom declined the amnio. My brother is is now 12 and no medical problems. I think I would feel like you I would want to know, but not risk the amnio. Good luck our prayers are with you.
I'm not in your shoes (yet) but I "think" if it were me I would pass on the amnio. Like you I would never forgive myself if something "I" did harmed my baby. This is something I think about a lot since we will most likely try for one more baby. I go back and forth between wanting to know in advance or waiting until delivery. I wish I could be of more help....you are in my thoughts and prayers. I'm sure whatever decision you make will be the right one for you and your family!
I don't have any personal experience other then my amnio with Lucas at 38 weeks to check on his lungs for induction. It wouldn't have mattered if I started contractions at that point, though I did not. I thought the procedure was painful but it was very fast. I'll be thinking of you and praying for you. Hugs.
I've had 2 amnio's, one at 33 weeks and one at 17 weeks. At 33 because our daughter was very sick and they needed to know what was wrong so they could help her. I agreed because I was young and fully trusted the doctors. The second was with Bennett because a level 11 ultrasound showed shorter limbs for gestational age and a major heart defect-blood work was 1 in 10 for DS. I needed to know, even though I pretty much knew. Plus my amnio with Ainsley went fine so I felt comfortable doing it. Very quick, pretty much painless and you can see that they don't get near the baby. But it's a personal decision. Would I do it again? I don't know. I'm a need to know kind of person but I'd have to be in the moment to decide.
Ask for the level 11 ultrasound to see if there are any markers for DS. It's just so rare unless Porter has the Robertson form of DS (parent's are carriers)- do you know if he does?
They should be able to do the level 11 so you can make a somewhat informed decision, if you see markers and really want to know.
For what it's worth, I'm glad I knew but that's me. I knew the risk but felt it was so small. I had been in risky situations with my daughter so I just felt confident. I of course would not have terminated but prayed hard that our baby would be protected during the procedure. I know this is a hard decision but you need to ask yourself if you feel you can have a healthy pregnancy (emotionally), than don't do it. I couldn't. I would have sent myself into a stress filled 5 months and it wouldn't have been good. But many people can live without knowing and do absolutely fine.
The testing question was big on my mind during my pregnancy after my daughter Macy (DS). I would go back and forth between definitely doing the CVS as early as possible to only doing non-invasive tests. The impact of these tests is so much greater when we have already been the "1" in whatever number. With my baby I finally decided to forgo the CVS and do the non-invasive nuchal screen and blood work and go from there. Well the results came back that I was low risk (1:1600 or something) so I did not do the amnio at that point. If my results put me into a higher risk category I would have done the amnio, I personally would have needed the information, especially since Macy had a heart defect that was undetected until 3 weeks old (even with about 20 prenatal ultrasounds).
Because I have a blood incompatibity issue with my pregnancies I get weekly ultrasounds. At 30 weeks my baby showed signs of anemia so we had to do an intra-uterine blood transfusion (much more complex and risky than an amnio). Because they were in there already we had them check the chromosomes to. When we got the results that she had 46 it was a huge relief just to know what we were dealing with and I was so grateful to be able to go into delivery without the question of DS or not and just enjoy the experience. If I were to be pregnant again I think that I would do either a CVS or early amnio (after going through a intra-uterine blood transfusion those procedures don't seem like as big of a deal to me anymore). Although the 1:1600 should have been re-assuring I couldn't help thinking that I would be the 1 again and I personally just needed to know for sure. But that is just me. Other people are fine without knowing for sure.
Whatever decision you make will be the right one! And whatever the results are, you already know that there is an extremely high chance (based on Porters cuteness) that your baby will be amazing. I pray that he/she will be healthy to!
Oh, I'm so sorry you have to make these desicions. I have no advice. But praying your mommy instinct will make the right decision for your family.
We did do the Amnio the day of our 20 week appointment with Kaelyn because of the things they saw on the ultrasound. We just wanted to KNOW, and I really felt like everything would go okay with the amnio. It wasn't too big of a deal as for me, like pain wise. We feel like it was a blessing for us to know beforehand, it helped us prepare ourselves as much as we could. I just feel like that was better for our situation, than if we would have found out after she was born. Then we kept a really close eye on her afterwords because of all the issues there were. Its a hard decision for you to make, but one that I know Heavenly Father will help you with.
I had an amnio done with Addison at 20 weeks after they had given us a 1 in 2 chance of one of the Trisomy's being present (I was 25 as well). I opted for the amnio because I just had to know- I wasn't getting any sleep- I was stressed- I couldn't stop crying. I'm really glad that I did find out- not sure if I'd do it the same with the second baby unless the ultrasound revealed as severe of problems as Addison's did. I will say though, I struggled with the risk of miscarriage with the amnio (especially when the contract they make you sign listed the risk as 'spontaneous abortion'). I finally decided that this was something I felt we had to do for peace of mind/be able to prepare properly for the extra health needs, and that I could trust God with maintaining my pregnancy. It is definitely a tough call, and one that the answer could be different for every family. I'll be praying for you guys as you decide.
I've honestly been thinking about this lately. If will be a few years before my husband and I try again for another baby, but I'm scared that if we do have another one that it will have Ds, too. That being said...I didn't have the blood tests done with our baby. Our thoughts were, what are the odds? And even if he has it, nothing will change. We're still having him. I also think that if I had known, I would have been a wreck during my pregnancy.
If I were in the same position again, I'm not sure if I'd have the blood tests done or not. But, if I were in your situation I think I would pass on the amnio. Like you said, nothing would change. You would still have and love your baby.
The odds are 1 in 1000. But what were the odds of having a baby with Ds? My husband got testicular cancer this past June. The odds for that are 1 in 8000. The odds for someone my age (22, 21 when j was conceived) of having a baby with Ds is 1 in 1700. I have learned in the past few months that odds mean nothing at all. You can always, always be the 1. If you got the amnio and you were the 1 out of 1000, you would beat yourself up forever. And I don't think anyone wants to see that happen.
I will be praying for you guys!! Chin up!
i so feel for you...it is such a wierd unknown....you tell yourself you would be fine and you love your little one no matter what...which you do but it would still sting...i am not there yet...so i cant speak from any sort of experience...except that...the drs will already be looking for health issues in the ultrasounds...because you are increased risk as it is...and to be honest i was so glad we didn't know about cam until we could hold him and know everything would be ok....just being able to take things one step at a time was a good thing for us. so really it is up to you...will u have a more stressful pregnancy if you know or dont know? because everything else will be taken care of...they will see the heart issues if they are large enough to be a major at birth issue. be strong...we are here for you! and your Heavenly Father knows you.
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