TW - genetic testing result

Taylovesbrad · March 2018

Hi ladies,

I had a rough day yesterday. I found out I’m a carrier of cystic fibrosis. I must have skipped genetic testing with my first born because I was not aware until yesterday. It was a beautiful y hard call to receive and my hormones wouldn’t let me stop crying for a while. My husband will get tested this week- if he is positive there is a one in four chance our baby boy has it too.

Im not googling it for now.
I mainly wanted to ask has anyone gone through genetic counseling? I will not be doing an amnio or anything like that and I’m wondering what genetic counseling entails and if it’d be worth our time.
any prayers you guys can offer would be wonderful. I’m praying my husbands negative.: I just don’t want my son to have any challenges like this. It’s been quite a week here in jersey- we lost powers for days and days my husband was out of town. This has taken so much out of me emotionally and physically.

jsnakehole · March 2018

My doctor automatically did carrier screening for me because both me and my husband are Ashkenazi Jews. I'm a carrier for a super scary disorder called SLO. We had to wait another three weeks for my husband's results and he's a carrier for Gauchers, but not SLO. It was hard waiting for the results, but you just have to remember that things likes these, especially if there isn't a history in your family, are incredibly rare. Talking to the genetic counselor, who broke down the statistics for me, was very helpful.

mrs_drc_rn · March 2018

I don’t have any experience with this but just wanted to say I’m sorry you’re dealing with this. Especially on top of this stressful weather (Eastern PA here). Hoping your husband comes back negative.

livinthesunnylife · March 2018

I don't have any experience, but I'm thinking of you and hoping for a negative carrier result for your husband.

calimom2524 · March 2018

I also have no experience but just wanted to let me know I'm thinking of you and sending hugs.

hardlyhannah · March 2018

Hugs!! Thinking of you hubs and baby boy. I know it’s hard but you’re doing all you can do and you’ll be prepared no matter the outcome because you are an excellent mom.

pghctwife · March 2018

Thinking of you!! Scary news but you are only half the equation and I’d imagine chances are good your husband is not a carrier.

How long until hes tested/results?

we didnt have any genetic testing done on us, so I can’t speak from personal
experience but I’d imagine the counseling would be helpful... give you the actual stats and risks, and help guide you in treatment, ways to be prepared etc if necessary.

mrsbubbles-2 · March 2018

We went through genetic counseling this time prior to the NIPT test and honestly I would recommend it. They can give you more accurate stats and talk about additional treatment options if needed. It was so worth it to us to have the one on one time with the counselor and have all our questions answered.

Im so sorry you’re dealing with the stress of this, I have absolutely everything crossed for you that your H isn’t a carrier.

You’ll be in my thoughts, sending you hugs!

scottishlass1213 · March 2018

Thinking of you and well wishes for your husband’s test!

melissaf22 · March 2018

I did the genetic counseling and I thought it was very useful. I am sending T&P’s for you and that your husbands test shows he’s not a carrier

Taylovesbrad · March 2018

@pghctwife they mailed the prescription yesterday so he will take it ASAP. I’m not sure how long it will take.

Thank you ladies. This is really throwing me for a loop and I wish I didn’t feel so down. I really appreciate your support, prayers, and info on genetic counseling. ❤️ My last bump group was awesome (a lot more entertaining drama than this one lol) and we really supported each other through our pregnancy. I am glad this one is the same.

ecwk · March 2018

Sending big hugs to you guys! So sorry you’re going through this. I’ll be praying your husband tests negative.

ajesq2 · March 2018

I don't have any experience with this, but I wanted to let you know that you and your family are in my prayers.

7425cait · March 2018

Big hugs. I'm sorry you're going through this.

juliebird6 · March 2018

No experience with this either but just wanted to let you know that I’m thinking of you and hoping that your husband is not a carrier. Is there any history of CF in either of your families?

carrotsandpeas3 · March 2018

No experience here, but you are in my thoughts! Hang in there!

delujm0 · March 2018

No experience, but try to be at peace...there's nothing you can do to change anything now and if there is no CF in your husband's family and your son is fine, chances are that your husband is not a carrier. Even if he is, you would still have a 75% chance of having a healthy child, which sounds far less scary than saying that there is a 25% chance of the baby having CF, even though it's the same thing.

Hugs and I hope you get results soon.

aj1327 · March 2018

No experience here either but wanted you to know I’m thinking about you. I also hope you get results soon.

shri929 · March 2018

No experience but FX for good results from your husband

ladygali · March 2018

Thinking of you!

lalala2004 · March 2018

I’m sure that’s stressful! I hope you’re able to get the results quickly and that your husband is not a carrier so you can have peace of mind.

proudparent2b · March 2018

I’m sorry that you’re going through this stress! Hopefully your husband’s results will come through quickly and you’ll have a clearer idea of where you’re at.

kc0711 · March 2018

@Taylovesbrad I am also a CF carrier and have had extensive genetic testing done for myself prior to pregnancy (I have another rare genetic disease I found out about at 21) as well as genetic testing with DH prior to us trying. We did the testing through progenity and it tested for everything. It was very scary waiting for all of the results, however, I also learned that with results comes answers and with answers comes a plan. Hoping for a negative result for DH so you don’t have to worry. I know the waiting is the hardest part, so I hope the next few weeks fly by for you.

mrslittlemac · March 2018

So sorry you're dealing with this and I can only imagine the wait for his results. Big hugs.

LC12261012 · March 2018

Ugh, how stressful. So sorry you are dealing with this and hopefully you get the answers you need soon!

Secretstapler · March 2018

Oh, that sounds really scary. No experience personally, but it sounds like the odds are pretty strongly in your favor. I hope you get some answers soon!

elsieisamoocow · March 2018

I have no experience but I’m sending hugs!

dirtanddiamonds · March 2018

With baby #3, we were given high odds of babygirl having Down syndrome, after our AS. Worst phone call of my life. We proceeded with more in depth scans but declined anything invasive, as to not risk her health. Ultimately we were given a 1:25 ratio which is extremely high - all but a guarantee, in the medical world. Sadly, we were offered termination, even without an absolute diagnosis. We ended up changing to a physician at a Catholic hospital that was against termination and helped us just mentally prepare.

Baby girl was born 12/25 - completely healthy. Nothing was wrong. Maybe a miracle. We won’t ever know. But what I do know is to not ever get too anxious or excited about medical reports, because you just don’t know. It’s easier said than done, I know. But. Don’t panic. It’s all a guessing game now. And if you believe in a higher power, now is the time to just give it to Him. Turn over your worries. Let Him take care of you. He’s got this. Hugs.

hfooter · March 2018

Sending hugs and good thoughts for a negative!

I suggest the genetic counseling. Like others have said they really break it all down for you.

kburg15 · March 2018

So sorry you’re going through this. I’ll be thinking of you and fingers crossed the next couple weeks fly by. Waiting is always the hardest part

redheadbride15 · March 2018

I just want to make a plug for genetic counselors. I work with a lot of them professionally have also seen them personally as a patient. They are trained to understand exactly how scary a result like this can be for a family and will walk you through everything at your level. The good news is that the odds are significantly in your favor. Also, in the long run knowing this information will be helpful not only for you but also the rest of your family (including your kids) so you can be empowered moving forward. But I’m crossing all my fingers for you for a good result for your H!

Taylovesbrad · March 2018

Thanks again for the additional support and responses ❤️
Ill let you guys know what the results are when we get them.

hezzer78 · March 2018

I don't have any experience with this, but I wanted to let you know I'm thinking about your and family. Sending you positive thoughts and hugs.

windywoman · March 2018

No experience here but, I wanted to offer support. Sending you all kinds of prayers and good vibes.

mozartsmuse · March 2018

Sending positive vibes!!!

meeks2020 · March 2018

Big Hugs

C.F. was a possibility they screened us for after my son's anatomy scan and it came back negative, but I understand the stress you are going through while you wait for information and it's so hard. If you need to talk I'm here for you

nll0803 · March 2018

@Taylovesbrad Went through genetic counseling both before pregnancy, and once pregnant. Though my husband is Chinese, I am Ashkenazi, and weirdly some of the disorders appear in both groups. I'm a known carrier for CF, and a couple of other genetic disorders. Genetic counseling was the best thing I have ever done in regards to pregnancy. Its still hard, hearing likelihoods, probabilities, but the counselors help to explain things so well. This power outage hasn't helped stresswise (I'm here in bucks county pa without power too) I am sure, but my thoughts and prayers are with you.

Taylovesbrad · March 2018

Thank you @meeks2020 I keep crying if I think about it. These hormones are real strong!

@nll0803 oh man! I hope you get it back soon.
its the pits!

meeks2020 · March 2018

@Taylovesbrad all of the emotions you're feeling are valid and ok

I remember leaving the office and just crying non stop for days. People were messaging me and asking if our baby was a boy or girl and I just wanted to scream. I finally found a generic photo online to announce the sex and posted it on fb to get people to leave me alone. I didn't want my baby bump anymore and didn't want anyone to know I was pregnant anymore. After a few days I got into researching the conditions we were given, joining support groups, ect to learn all I could. It really helped me cope. If you do end up with a diagnosis maybe it will help you too

Taylovesbrad · March 2018

Hey ladies!!! So sorry I’ve been mia! I was having super annoying technical difficulties that the bump was not quick fixing.

we got the results last Friday that my husband was negative!!!!! I couldn’t be more thankful. It was very hard during the waiting process but the biggest relief to hear or baby has no risk of CF

juliebird6 · March 2018

@Taylovesbrad that’s great news! What a relief!

Want a personalized experience?

TW - genetic testing result

Re: TW - genetic testing result

Choose Another Board

Search Boards