How were you told your child had DS?

[kellyds]

We didn't know Joshua had Down syndrome until a couple of minutes after he was born. Our doctor said, "Well, folks, unfortuately it looks like we have an extra chromosome here."

Although I'm generally pleased with my doctor, I thought that was a poor way to deliver the news. For one thing, a lot of people wouldn't have a clue what that means. (My mom, who was there for the birth, immediately asked, "What's THAT!?")

For another, even though my husband and I were educated about what that COULD mean, it wasn't specific enough. There are a lot of conditions that arise from an extra chromosome. Because I know what kinds of things COULD happen, my immediate thought was, "I hope it's DS!" I had to ask, "Do you mean he has Down syndrome?" before the doctor would get more specific. I was very relieved! Many chromosomal abnormalities are fatal.

[Jessie]

I don't have first-hand experience, but according to Brian, after Jason was born (he was a preemie), the doctor came in the room, said "There is something structurally wrong with your baby", and walked out. The pediatrician and a social worker later came in and explained the situation to them - the social worker said they could "Go downstairs right now and take care of putting him up for adoption".

Brian said if his dad would not have been there to hold him back, he probably would have choked the social worker. He does believe if it would have been up to the ex, she probably would have done just what the social worker suggested.

Although I believe that Jason's mom has her own issues to deal with, I have often wondered if she would have received the news differently and received better support after he was born, maybe, just maybe, she could have accepted Jason for who was and this child could grow up with love from his mother.

It's very sad that when a little one enters the world like that where there is so much pain and sadness . . .

[ashleysmom]

I was told by the Hospital ped. that my baby had ds.
First I hear the Dr. call the nurse to go get a ped. right away.This is only when Ashleys head is out. I asked what is wrong. he said nothing and rolled her up on my belly. She was bright purple. I thought she had breathing problems. Then the nurse takes her away and the Dr. told me to look at her she is fine and turning pink. He then states my placenta is so short and the afterbirth would not deliver for about 1 hr..
The Ped. comes over to me and dh and says the reason the Dr. called me in was to look her over because he suspected ds and I am confirming his dx. So that was how we found out.
It really sucked!!
But we LOVE her so much anyway. ;D

[meghans_mom]

We knew before Meghan was born....the definitive results came in after my amnio. The doctor called me at work (WHICH I TOLD THEM NOT TO DO!)
"Oh, it's a girl (WHICH I TOLD THEM NOT TO TELL ME!) and she has down syndrome"

so, while I was annoyed at the office & doctors there, now it's not such a big deal (because we pretty much knew what the answers from the amnio would be) - but the doctors were such idiots during my pregnancy (atleast the male doctor) I never went back after my 8 week check up.

laurie

[ourangelalicia]

I knew when she was born that she had DS. It took me a couple of days to convince the Dr to do the karyotype, and then we got final results from that.

I'd bet money that the most surprised person was my Dr. My in laws are in denial to this day but my Dr was genuinely surprised. He's a very cool guy though.

[Mary_L.]

We didn't know until after Patrick was born. They let us hold him for a couple of minutes and then the ped doctor took him and started asking us tons of questions. I didn't think anything of it and just answeres them. Then they took Patrick upstairs and Bernie said to my doc (who was still sewing me up), I think he looks like he has Down syndrome. I was floored~I didnt see it at all. My doc said she had wanted to wait until she was done with me before she said anything to us but that, yes, they suspected he had Ds. I was surprised at how calmly Bernie and I took the news. Bernie had always said that if God needed to give a family a child with a disability he could give one to us~I guess God heard him and gave us our precious little guy!

[kellyds]

We were fine, too, but we had at one point considered adopting a child with Down syndrome.

[kokie]

I was not told directly by the Dr that my brother had DS, because I was not able to be in the room when they were born and I didn't get to go into the NICU right after they were wheeled in there.

My dad suspected he had DS right after he was born, before the Dr's said anything. My 14 yr old sister and I were standing in the hall way between the OR (no, my mom didn't have a C, they had her in there incase of an emergency C) and the NICU. We saw the babies right when they 5 and 10 minutes old as they wheeled them to the NICU. I lost it as soon as I saw them, I was just so thankful they were born and everything went well. My dad went in after them and came back out a couple minutes later and says "I have some bad news". Our hearts just sank. He said, "It looks like he may have Down Syndrome [due to some features]". We were both relieved and were like, oh, ok. I thought that's not bad!!!!!

It was confirmed after the tests came back about a wk later that he had DS Trisomy 21.

After we found out that he may have DS (my dad, friend who was a dr, etc) were pretty convinced he had it, so on our way home from the hospital that day, my dad came up with his name (he thought of it in the hospital, but wasn't fully decided) - Osiyyah. Which means "The Lord Is My Maker" in Hebrew. It seemed so perfect because the Lord is the one who made him the way he is. It is an awesome way to be able to glorify God.

So, we are now blessed with my wonderful little brother. Thankfully, God has blessed us with a healthy little baby with DS as of right now, he has no health problems. I (we) love him so much and so dearly!

[Jodi]

I had to have an amnio because things were so funky on the level 3 ultra. I was called at work by a genetic counselor. They were supposed to call the house, but the girl said she kept getting the answering machine. How 'bout calling after 5??? Duh!!!

[Kristen]

I have told it a hundred times, so I won't again, but we'll leave it at not a pretty scene! Oh, did I mention I will probably have to do my OB clinicals where I had Carter? Thank GOD that even if on chance I do run into one of them they will not recognize me because I do NOT have anything nice to say to them and I would hate to fail a clinical because I told a doctor to f off!

[YoshsMom]

Our first sign was from the ultrasound, the long bones weren't growing long enough. Then I had an amnio and found out for sure. My dr. was great, the only negative thing he said was I'm sorry its your first. After that everyone was supportive and allowed us both to grieve for the baby we had imagined and still enjoy my pregnancy. Oddly enough, I was more freaked out when he said Yosh had club feet than I was by the ds.

My mom asked once if we were sure we wanted to have him, and then accepted our decision and has been nothing but supportive.

[momofrussell]

I don't know why but reading all the ways you guys were told about your child having DS is making me cry.
Some of the ways discribed is just making want to cry... and MaryL... gosh, talk about bringing me to tears... your post made the tiny tears come out full force....

For me... I got a call from my midwife one day (AWESOME lady by the way) that my AFP was high for DS.. or whatever way they say it... I said I didn't sign for one, she says "you didn't?", I say NOPE... but the lab that did all my blood work did an AFP anyway. She said it probably is wrong and to go get the Level II US anyway.... so we did.

The perinatalogist that did my Level II knew about 5 mintutes into the US. Although he was not my normal doc nor was he at the place I usually went to, he was nice but did say something like "Well, I am pretty sure your child has DS". He told us about the nuchal fold and how Russell had a herniated umbilical cord, both good indicators he had DS. At the time we still didn't know the sex so the doc also wanted to know if we wanted to know if it was a boy or girl. We said sure (I am crying at this point... so I didn't care if it was a boy or girl)... and he said it was a boy. This doc was pretty compassionate which was good.. very caring... asked if we wanted the amnio and we said we needed to think. He let us take a walk and we came back 15 minutes later and did the amnio. (my only concern about the amnio was missing work the next day, not risking a miscarriage... I actually called my boss and asked if it was ok if I missed work the next day to have the amnio! LMAO!!!! )

Two weeks later my midwife called me to tell me that Russell did indeed have DS. She asked what I wanted to do. She did not PUSH an option either way. I told her that we were going ahead with the pregnancy and asked if that was what all parents did... and she said no. I had the most awesome midwife though... she and I bonded through the whole experience. She was with me all the way until the end... delivering Russell and making it a wonderul pregnancy and delivery.

When I read about docs and their "execution" of news, I feel so bad for some of you moms and dads. I wish there were more midwifes and doula's out there to help make even the events like these more wonderful... because DS, or not... or ANY anomalies for that matter, the pregnancy and birth should be as wonderful and beautiful as can be....

A.

[Emilysmom]

At the beginning of my pregnancy with Emily, the doctor explained that the placenta was in the wrong position and that we'd just have to hope that it moved before her due date.......if not, I'd need a C section. He told me they would do another ultrasound a few weeks before her due date to check the placenta placement.
~

Exactly 3 weeks before her due date, we went for that ultrasound. We were so excited and totally hopeful that the placenta would be exactly where it should be........and we were really happy that we were getting the chance for another "peek" at our little girl. We even took the boys (ages 9 and 3) with us to see her! It became obvious after the technician kept on looking and looking and looking.........and focusing on her heart, that there was something he was concerned about. He asked the boys to leave the room and called my doc to ask "what other body parts should I be focusing on"? The tests showed that Em had duodenal atresia (in fact, her stomach and intestines were not connected at all) and we were scheduled for another appointment at a larger university hospital the following week. That led to an even LONGER ultrasound and our first meeting with the doctor who delivered her (NOT my favorite person in the world!!). He said "Do either of you know what Down syndrome is"? He went on to explain that in 99% of all cases, duodenal atresia ONLY occurred in babies with Ds. So, he recommended another test......similar to an amnio, but they actually took Emily's blood from my cord and tested that. (Called PUBS) This was on a Friday afternoon, and we were told that we would receive a call on Monday morning with the results. When no one had called us by 4pm on Monday, I called the doc and was told that the lab had messed up the test and they'd have to RE-DO it, and we wouldn't know till Tuesday afternoon. (fortunately, that did not involve getting more blood from Emily...they just used more of what they had in the lab).
~

On Tuesday afternoon, the phone rang and my husband answered on one phone and I answered on another one........and the doc said "I'm sorry to have to tell you this, but the tests confirmed that your baby does in fact have Down syndrome. We are 100% sure". And, we have talked here many times about how people can ask the stupidest questions.....and I sure did that! I said to him "can you tell me how severe it is"????? Sheesh! He stumbled over his words and basically tried to explain about early intervention, etc. (wayyyy over my head at that point!!) He apologized once again for having to give me this news, and confirmed what we had already been told..........that our baby would need surgery within 24 hours after her birth.
~
Within an hour, our best friends were there and we were praying that we would be the kind of parents that Emily needed us to be..........and sigh....I still pray for that!!

Susan

[christie]

Sorry if this is loooong BUT I tend to ramble, LOLOL

Chris was a scheduled C-Section and when I was being prepped for the C-Section the Ped came into see me and told me what happens once the baby is handed over to her. Then she started to walk out and said any ?'s. I just said to her K, I get all you do BUT do you check for DS right then. She stopped dead in her tracks and said WHY do you ask that, do you any reason to believe the baby is DS?? COLIN looked at me too and said WHY would you ask that?? I just did, I felt all along this may be the case even thou I had no testing prior, that would make me think this . Anywho, I just said to them both, just wondering See GALS, I even wondered bout things back then, LOL, not a new thing for me

During the birth there were some complications and then I remember looking over and seeing Colin holding Chris and for the first time in the whole time I was pregnant, I thought OMG the baby is FINE or Colin would not be holding him Right after that they drugged me lots to take care of the complications and I was out like a light. Next thing I remember is waking up to lots standing around me I mean lots, soooo not like when I had Kodi Lee. I looked to my right and there were my two OBGYN Docs and I notced they had tears coming down I looked over and saw my Ped and she said "Christie, we do believe your son has DS" I remember as if it were yesterday that I immediately started crying and chantting "OMG I should have had an amino (sp?) I said it over and over and I looked at my OBGYN guy I had to for years and he just held my hand with tears in his eyes and said "This is a very emotional time, you made you decision NOT to have an amino when you were not emotional, it will be fine, Chris will be fine, just give this some time to sink in" After that I looked at Colin and then honestly I fell asleep, I am sure they drugged me, I was truly out of it for the next 24 hours. But that was due to as I said I had complications after Christopher's birth. When I woke up I remember sooo well the phone by my bed and the reciever was off the hook, Hmmmm I found out later the nurse took the reciever off so I was not disturbed for a bit. I swear to you the seond I hung up the reciever the phone rang and it was my MOM ;D Bless her soul ;D She told me its OK and will be OK and the rest is history...

CC

[ALLISA]

This is definielty a story I have told many times on Uno....

Erin was my 3rd & I told my doctor all along that I thought something was wrong....my preganancy just felt different, and not right. I didn't insist on an amnio becuase i was under 30. And I just hoped he was correct when he said a lot of moms get jittery when they think they have 2 healthy kids already.

She was born at 5 AM.....and the Neo-natal nurses were called because when she came out....she was and I quote the doc...."holding the placenta in her lap"....which is really funny now....because when she wants something.....she has a death grip on it !! LOL.....anyways......

They were busy in the corner working on her, etc....they didn't even tell us the sex until my husband asked.....and we just knew something was wrong.

I just cried & cried because I had horrible thoughts in my head of derformities or that she would die.

The doctor (not my regular OB) then came over and told us they suspected the baby had DS.....I was mostly relieved because my thoughts were much more horrible.....then I wanted to shout "I KNEW IT WAS SOMETHING !!"".....then I thought....I don't want a baby with DS.....what are the chances she DOESN"T have it ?

The doctor was very nice and said they had to test her, but that she wouldn't have told me unless she was 99% sure that she did have it.

Then they let us hold her and I was so afraid....so afraid that when I saw her little face, I wouldn't fall in love like I did with her brothers.....I was afraid to look at her because I thought I wouldn't feel the same....and I was so glad to be wrong.....I saw her little face and just cried with joy...she was so perfect.

Then as the hours went by....we found out about her heart defect and the ds didn't even matter after that.

The one funny thing I will always remember is all the docs & nurses and EVERYONE telling us to get Early Intervention....& I was sooooo clueless and thought it jsut meant "get intervention & get it early" I didn't know where to start...where to look.....didn't know there was such an organiztion & all I had to do was look in the phone book under "Early Interventin"

All in all...I think we were told in a good manner.... I never heard one negative comment from any one in the hospital....just a lot of hugs and support for the "stress we had"....but nothing negative

Allisa