has anyone else here had a trisomy pregnancy?

We lost our little girl at 13 weeks as some here know to trisomy 13...I have searched the archives and only found 3 prior posts...has anyone else here lost their little one to trisomy and tried again and had another genetic difficulty?  My husband and I are both being tested as the 13th chromosone was translocated, rarer than trisomy in itself.  I will be 39 next mth, my husband is only 35 and we both have one healthy child from prior a marriage, so they dr's are thinking total fluke, but we are testing nonetheless...provided the bloodwork comes back normal we will ttc again, I am getting mixed messages as to how long to wait...I had a d&c on 7-18 and have had virtually no bleeding or cramping at all...any advice would be greatly appreciated...baby dust and prayers to all.....

[stormy1373]

Hi Ima...well...its been realllllly rough emotionally...I have cried daily and nigthly... I had my first "good" day Monday and so far, I am having a good day today, thank god for my husband, I dont know where his strength is coming from.  She was very sick Ima, the dr said at only 13 weeks he could see deformation in the brain, or the forehead rather, already.......and dandee, I thought you had posted about trisomy at some point, thank-you for your information, I will say a prayer for you nightly...and like you, I think I will be just as scared and running to the bathroom, I know exactly what you mean, I had 3 "scares" during this preg before it was over..I have looked at, I think, every single website there is about trisomy, but I feel more comfortable here and just wanted to know if anyone had gone through "this" too.  I thank you deeply for your thoughts and prayers and wish you all the best...bundles of joy to you soon and stinky diapers and all of the good stuff too, lol.  Thank-you again...

[amand221]

mommaprops, I'm just curious to know if at your next ultra sound (after they first fount the cyst), if it cyst went away?  I had a Trisomy 18 scare at my 20 week ultra sound b/c of a cyst on the brain but then my bloodwork came back normal.  Didn't want to do an amnio so I don't know for sure what's going to happen, though the doctor told me it should be gone (the cyst that is) by my 28 week ultra sound... which I have next week.  I'm starting to get a little anxious about it.  Wondering if they could still see the cyst at your next ultra sound?
Thanks.
~Amanda

[amand221]

Meant to post this in my last message but hit "Post Comment" too early.  stormy1373- I am really sorry for your loss. I don't have any good advice or words of wisdom for you, I just wanted to let you know that you're in my thoughts and prayers.

God Bless!
~Amanda

[ima1]

my internet was off when you origionally posted, but I looked for you a few days later, after reading your post.  I am soo sorry about what has happened.  Ive been thinking about your family and praying for you guys a lot.  How are you dealing with this?  Hows yuor husband doing?  I hope the d and c went well, they are a b**ch, Ive had two with both of my miscaarriages.  As for the ttc question, I had a d and c on March 1st, used bc that month, got af on aprox. April 4, started ttc on the 14 aprox., and am about 14 weeks pg now.  Aside from being sicker and weaker than with my other pregnancies, and needing about 14 hours of sleep a night, everything is ok.  I hope you get your bfp soon, and everything turns out good.  I am here for you  if you need a shoulder to cry on.  Ive been through pg loss, and also years of onfertility, so I know how it feels.  As for the trisomy, I dont know anything about it.  Sorry.  Ther ewas a woman posting for her daughter in law, but she disappeared quckly.  She basically wanted advice on how to convincce her dil to have a d and c.  Anyway, let me know how you are doing.

[dandeelyon]

I lost my last baby to trisomy 21 (Down's Syndrome) back in March.  Her little heart quit when she measured 13 weeks 6 days.  I'm currently 9 weeks pregnant with what will be our last try.  I'm 35 and have had a total of 3 miscarriages in a very short time and cannot bear the thought of another one.  The first two pregnancies were not due to trisomies of any type.  

This baby is doing fine so far.  I gor for nuchal testing and a level 2 ultrasound on the 7th.  I'm hoping and praying everything is ok.  I'm not sure what decisions we will make if things turn bad.

We did meet with a genetics counselor and I have been tested for everything under the sun.  They too seem to think it was just a horrible round of bad luck.

As for trying again.  It's hard to give people advice on that.  You need to be mentally prepared to be pregnant again.  As much as the need to replace the loss is there, getting pregnant again is absolutely horrifying.  It's almost impossible to enjoy it.  I cannot believe how many times I run to the bathroom, not because I have to go but because I'm checking for blood.  Even feeling sick is not positive for me.  I'm always trying to determine if I'm not as sick as I was the day before.  I'll be very happy to make it to 16 weeks.  I'm really hoping I can relax then.

I am so sorry about your last baby.  I hope the next pregnancy goes well for you.

[mommaprops]

I too am sorry for your loss. Our baby (8 months now) had cysts on her brain at 19 weeks pg. Trisomy 18 was one of the possible causes. My dr. sent me to a fetal specialist for testing. The bloodwork you & your husband took will give you lots of information. Our dr. took the bloodwork, my age, & the fact that no other defects were noted on the u/s & gave us our chances of her being born with one of the disorders. Luckily my bloodwork came back fine & she was born pretty healthy. (heart murmurs) As to when to try again after d&c, I was told after my m/c (our 1st pg) by my doctor to wait 6mos so that my body could build back up & be prepared for a pregnancy. Seven months after my d&c I was pg. Also I'm sure you've done this already, but if you google trisomy 13 there are lots of sites with info, stories from others who have gone through it & support groups. I'm sure someone on there has had a success story. I hope something out of this helped & good luck to you.

[mariea]

I just wanted to say I'm glad to hear you had your first good day monday and are back on the site.  After losing my second last month, you gave me some words of encouragement and I always saw you on many other posts.  I'm sure you don't feel strong right now and are still grieving, but for me, while I was going through my pain, I always saw your posts and thought to myself "she is so wise and strong".  Thank goodness for our DH's.  be well and take all the time you need to work through your pain.

[stormy1373]

You are an inspiration to me,,,,your words have provided me great comfort.  It does my heart good to know that I have provided you any comfort at all during your tragic loss.  Everyone keeps telling me (all my life) how strong I am {they have never told me I am wise, "chuckle"}, I think to myself, I am not strong, I cry like a baby at sad anything's, I have been through tragedy in my life that most could not fathom, mind blowers, but this, by far, will be the hardest thing I have ever had to endure.  We always think...it couldnt happen to me, at least that is how I have always felt...I could only console, but not understand, now, unfortunately, I understand all too well.  Your heartfelt post has really meant alot to me....so Maria, know that you have done shown me great kindness, and never sell yourself short!  Good luck on your next try, you are in my prayers...

[mommaprops]

Yes, her cyst was gone at a 25 week u/s. Apparently from what I read when this happened babies have these cysts on their brains, they're aren't a big deal until they get over a certain size. She actually had 3 cysts, but only two of them were bigger than they should be. I too didn't do the amnio. My chances of a m/c were a little higher than my chances of her having trisomy. They also did my u/s earlier than I had had done with my previous pgs. (new dr. & new town) My first ob/gyn at 20 weeks said we were going to wait til next appt. for u/s. I was upset & he said that we were looking for more than just the sex, but to make sure everything is forming correctly. So with my second pg I was using a new dr. in the same practice (previous one retired) & I had the option to u/s @ 20 weeks, but I remembered what my previous dr. told me so I waited. No cysts were ever seen on those babies. But my third they tested me before 20wks & there they were. It's very common & I wouldn't worry too much. I know it's hard. I have the name of the cysts here with me, but I can't make it out. She was born with 3 heart defects, two of which have healed now. The drs say that they are not caused or linked to trisomy. Good luck to you & I bet they'll be gone! Let me know how it goes.

[Northern Mommy]

Hi Ladies,
I too had a baby with Trisomy 18 and she died at 13 weeks gestation but I was 17 weeks along before I started spotting. That was my first pregnancy.
After that, I had 3 more, all with Chromosome Abnormalities and I am currently pregnant with my 5th try. I am almost 8 weeks along and I had my ultrasound on Tuesday. The Dr. says the baby is of normal size and the heartbeat was found. I even got a picture! My first one!
Right now, I'm crossing my fingers and legs and toes that this one works out as I cannot endure another m/c. It is just too hard to bare.
The Dr. said that the Trisomy was abnormal as it only happens here and there, but the others showed problems too so it makes me worry. They have tested me for my Chromosomes and it was fine, but it was only an inital test and didn't go into details with other problems one could have.
So for now I'm waiting until next Tuesday to see if this one has grown more in the past week. If yes, all might be okay.
Please pray for me!
I will pray for all of you. No one knows how one must feel until it happens to them.

[vesta_fire]

Sorry 4 being longwinded but it's necassary.

Hi Stormy,
First off let me tell you my heart goes out to you and yours.  3 weeks ago my husband and I lost our baby due to Trisonmy 13.   I was around 14 weeks pregnant.  We have one healthy 10 month old son and were very excited to have another lil one.  This is our horrid story.

Three weeks ago, we were sent for an ultrasound which took an hour. I was worried something wasn't right.  Then my hubby was brought in. The baby was waving their arms around and I said "oh look the baby's waving at you Daddy."

From there we went directly to our new doctor's office.  The doc asked a few health questions and we spoke about how we planned the baby and were thrilled 2 be there.  Her assistant came into the room and whisphered in her ear. Our doctor said"oh my god."  She left the room.
   She returned a minute later & told us she was very sorry. Our baby had trisomy 13 and she had told another couple in the office that it was their baby who had it.  Denial set in.  I began to explain that our very healthy 10 month old son had cysts on his brain(indicator of trisonomy) when I was pregnant.

She explained that the baby's brain didn't divide and that they had a fluid sack indicating a mentally challenged future.  We thought ok so we're having a baby with challenges is fine by us.  

She began speaking of our next pregnancy as if the baby in my belly was non-existant. We thought if the baby will be mentally challenged we were just having a special baby.  The doctor said not to go by one ultrasound or opinion.  We were booked with a scientist the next day for more thorough tests. In tears we left & I got loads of blood taken.  

We were feeling destroyed & had little hope that the 3 techs who looked at my ultra sound were wrong.  After 14 weeks we had already loved our baby very much and looked so foward to having them.  

A few days prior to this I had labour pains.  Petrified I was going 2 miscarry, I tooka hot bath and the pains settled.  The doctor's have now told us that was right about the miscarriage. When we left the doc's, they told us if I started to miscarry gather what came out and bring him/her to the hospital for testing!!!!!!!!!!!  

Anyhow we saw the scientist.  Our lil one's heart was on the wrong side of their body, the fluid by the brain indicated mental disability, the baby's brain hadn't seperated at all and was causing cyclopes syndrome, the baby was much smaller than they should of been.  

The doctors told us our baby wouldn't make it to term and if they did they would only live for a few hours hooked up to machines.  We had to go and have a d&c and they would do genetic testing on the baby. OH MY GOODNESS YOU"LL NEVER BELIEVE THIS if I had the d&c on the weekend that I should take what was left of my baby home and put them in my fridge!!!!!!!  Another idea to transport our babies remains was to carry them ourselves to our doctor's office.   I didn't want to do the d&c.  I did and was hyperventalating and crying the entire time.  After the procedure the nurse was trying to rush me off the table into the recovery room while I sat ther hyperventalling as if I was still crying but no tears were coming out.

The clinic insured us our baby was deliveried to the hospital for us.  Thank goodness. Now 3 weeks later we were just told they can't do testing because someone put our baby in formaldihide.  

That's our story it felt good to type it out.  Reading others postings on here breaks my heart for all of you because I feel your pain and wish you well.  Again to the length was a must I'm a long winded gal.

[3beautifulbabies_1atrisomy18angel]

Hi all. I am new on here. As you can tell by my name, I have a trisomy 18 angel, he was born alive & lived 51 beautiful days! Here's what I learned throughout my journey. T13 & 18 are caused by a fluke of nature, the extra chromosome is there by getting a full set of chromosomes from one parent (usually the mom) instead of just half. 50/50 usually trisomy 13 & 18 is 50/100. Its a fluke of nature. women of all ages have had affected children but risk his higher the older the mother is. "soft markers" dont always show on US, many of his didnt. Blood test are just risk evaluations not yes/no answers. Many characteristics of t13/18 are found in children without the condition. Afull chromosome analysis of the child is the only way to know for sure. I have a print out of my sons & I see him in the print out, its amazing! Losing a child for any reason is horrific, but I can tell you all: it does get easier. It's been 26 months since his death & I smile more at his pics & memories of him. Ask me, I'll help if i can!