She asked me if we knew before Jaxson was born that he had DS or heart defects. I told her no that it was a total surprise. Then she asked me if I would recommend for people to get the prenatal testing or not. I told her that was tough because I think it depends on different people's personality's. I didn't mind at all, but I'd also worked in a childrens hospital and knew all about heart defects so it didn't scare me. But I have a friend that was prenatally diagnosed and she said she would have to know before their born, that she has to be able to prepare. So everyone is different and I can't recommend one way or another. I think if you know you won't have an amniocentesis done, then don't even get the blood test. Because the blood test always seems to show increased chances and 90% of the time its wrong. Then parents are upset until the baby's born. Our DS foundation here says she gets calls a lot from people that have already aborted. What the heck are you calling for now? Its too late. One doctor made an abortion appointment before the couple left the office. Hello, shouldn't this couple think it through first?
I did tell this med student that I think what needs to be done is we need to educate our OB/GYN doctors. They are giving out old info on DS, and I think they need to push a little more for adoption rather than abortion. The abortion rate for DS babies is staggering, even in this day and age. There are over 200 families waiting to adopt DS babies, and thats only one adoption program. They need to have an conference or something and give out new updated info on DS and what it means for kids. That they are more alike than different. And they are not severely delayed like doctors still say they are. Then I was thinking in bed last night, would it really hurt to make up like a flyer, and sent it out to OB offices. Nothing nasty, just some pics of our kids, and some updated info. And just asking them to read this before they talk to another couple expecting a DS baby.
I mean, is this not a face that deserves a chance?
And does she look that different?.jpg)
And does he look severely delayed?
And these are just a few of our adorable friends. What do you think? And of course here's some pics of my sweet baby, wait, I mean big boy.
Go for it Lacey. I love the idea. Our DS guild here trains parents and they go meet with doctors to dispel the myths and give them updated information. It is a really cool program. We have had lots of great response from doctors on it too.
ReplyDeleteGood luck and let us know what the response is.
You know,we found out at our level 2 at 21 weeks, that Zoey had AV complete and more then likely would be born with Down syndrome..I was offered an amnio and given a few week window upon which to decide if abortion was the route we wanted to take.Neither was even necessary to warrant a discussion.But that was us.I totally and completely understand peoples need to prepare,the latter,well,not so much.As a family who has adoption in our hearts,not knowing if and when that will actually come to fruition,I often wish I could leave my number at various offices,letting couples know,if they carried to term,there are SO many families waiting and wanting to adopt.I understand also that some families that are indecisive,would see Zoey and all her struggles and that would scare them but I so wish that they could look beyond that and see the face of hope,unconditional love and sheer perfection .. just like the pictures of Preslie,Justin and the very grown up Jax.I am filled with overwhelming sadness,knowing the abortion rate will indeed increase with the new guidelines put out by the Academy of Ob/Gyn.How we change that,I have no idea.but I have to believe that there is a way.I just have to.
ReplyDeleteI think that a letter with some current pictures and stats would be good. A copy of gifts would be really good too. I found out prenatally and got a cvs. I just needed to know for several reasons. My u/s had shown a heart defect, a brain mass and nuchal fold. By the time Wysdom was born I was so happy to see him and totally accepted him because I was able to prepare. At the time of the u/s I was given a package from my midwive and it was from the local ds office. This helped out by providing lots of current info and new parent contact information. I was able to call several families while pregnant and deciding what to do. Those contacts were such a gift to have. Could you imagine the difference if everyone who had a prenatal dx would get some contact numbers of families willing to answer questions and a current information package wth pictures, resources and book lists. I think you have the passion and personality to help and impact many lives.:)
ReplyDeleteAddy's parents had no clue that she had DS or ALL of the medical issues that she was born with. I'm not sure how her bowel issues weren't discovered on ultrasound but apparently they weren't. I'm pretty positive her birth parents never would have aborted her but it may have been better for them to know beforehand but I don't know! Jax looks great by the way!
ReplyDeleteI know something needs to be done. When I was pregnant with Emmie there were no words of wisdom from the doctors, no positive info on Ds, just the option of abortion. No one ever mentioned adoption. Actually I think my doctors were in favor of an abortion, I got the feeling we disappointed them with our decision to keep our baby no matter what.
ReplyDeletei think the first ones that need to be educated are the doctors!!
I think that is a wonderful idea. I am a huge advocate for adoption. We talked about doing that as well. Why don't you contact Suzie Smith and see if the state level can do something in way of flyers and each county president can take it to the OB's in their area. I did take my card to several at McKay Dee Hospital and told them that is a couple is faced with a prenatal diagnosis of DS to contact me if they want any advice or support.
ReplyDeleteI agree that something needs to be done as far as updated education for doctors and parents.
ReplyDeleteWe didn't know about V's DS or his heart defects until the day he was born. Personally I'm glad I didn't know because I probably would have worried WAY too much. The DS has never really been an issue with our family, but I suppose the heart defect would have been nice to know about. Just so we could have been better prepared. The fact that V was born at a hospital that was equipped to handle him was sheer accident. We were very lucky to be there. If I had known I would have pre arranged it, but fate brought us there anyway.
Almost all of the DS parents I have come in contact with here have said that their doctors pressured them, some heavily, to abort. A couple of Moms even had to change OB's during their pregnancy because of it. Now I agree with parents being presented with all their options, but no doctor has the right to pressure a family one way or the other, and I really don't believe that any other option other than abortion are routinely discussed.
How sad is that???
I love DS kids. I just want to say, My niece and Grandson both diagnosed at a high percent of DS with the blood test, both declined amnio, and both children are not DS babies. In our case they wouldn't have been loved less It just shows twice in my life I heard this and both times it was wrong.
ReplyDeleteI think that is such a great idea! I agree that it is always a choice to have prenatal screanings and I wasnt sure if I should do them or not. I am so happy I did during the triple screen test done on me at about 16 or 17 weeks they said I had high AFP levels which could mean two things...an open spinal cord defect or that I could be having some problems with my placenta. My baby was severely IUGR and I was on bedrest for the remainder of my pregnancy. My daughter was born at 34 weeks weighing 3 lbs 5 oz. Come to find out I have a rare blood clotting disorder and had they not caught this it is likely she would have passed late in the pregnancy. SO it is definitely a choice but I am a big advocate for testing because of scenarios like this I would have never known I or she had something going on. But those preliminary tests should ALWAYS be folloed up by more difinitive tests to be sure diagnosis is correct.
ReplyDeleteI think that it's a great idea! I'm glad that I didn't know prenatally, and I get asked if I would have wanted to know A LOT. It might have been nice to have been a little more prepared, but wouldn't have made a difference to us. People definitely need to be more educated about all kids with special needs.
ReplyDeleteLacey... you are just too cool! I think that is a fabulous idea. It really breaks my heart to hear these stories. I agree that it is the uneducated doctors that aren't helping. I know that everyone handles things different, but sometimes these women just need more time and information to ponder their decision.
ReplyDeleteI think it's a great idea. Of course, I am a little biased on the adoption front :)
ReplyDeleteThis is a bit of a hobby horse of mine. I can't stand the way doctors immediately jump to abortion talk - it is because they, and society in general, don't value people with disabilities. All they see are the negatives and they assume people with intellectual disabilities have little or no quality of life. I dare any doctor to suggest my daughter doesn't have a life of quality - it is definitely a different quality to the one her sisters have but it is a life of quality none the less.
ReplyDeleteOK...I'll get off my soapbox now. But to answer your original question I do think it is worth having tests done so you can be prepared for what will happen at birth - especially if surgery is needed.
You go girl! This is something the CT Down Syndrome Congress has taken to fighting in our area. They've even made a video just for docs, then one for parents and one for medical students. You might want to contact them. Maybe you could get some copies. Good luck! This is awesome.
ReplyDeleteWe didn't know about Gavin's heart defects or that he had Down syndrome before he was born, and I'm actually glad that we didn't know. It wouldn't have made a difference with us, so I was happy to be ignorantly unaware during my pregnancy. I would have hated to be worrying about what was to come throughout my pregnancy!
ReplyDeleteI think that doctors should definitely be educated about this! Abortion is usually brought up by the doctors and I don't think that they should even offer that route to expecting parents. It's a personal matter for the parents and when a doctor brings it up, I feel it just gives another person's opinion and feelings into this personal matter.
I have found Gavin to be a HUGE blessing and I think the world would be a better place if there were more like him around! Plus, like you said, many are waiting to adopt these special children!
I say go for it! If you want any help in educating the doctors, let me know. I would love to be of assistance in this! HUGS!!!
I am at this very moment getting a letter ready to send out to the genetics department at our local hospital where Mark was born. I want to make sure that these people know that adoption IS an option. When Mark was diagnosed with ds(at 16 weeks gest.) the genetic counselor had no info on adoption of babies with disabilities. She made it seem that we were probably not going to find anyone "willing" to take on our "problem". I really wanted to know because I knew in my heart I could never have an abortion, but I was not too sure about raising a baby with ds either. I thought it was terrible that these people who were my only source of info at the time had nothing to give me about adoption or even raising a child with ds! They could not even give me the name of a family that had a child with ds that I could talk to. Thank goodness for the internet. I did lots of research and found a good friend in a woman who had 6 adopted kids with ds. She had lots of first hand info on raising a child with ds as well as adoption choices - Well, I found out that there were over 500 waiting families! I was thrilled and could not understand why someone like a genetic counselor would not have this info!! So I am trying to put together an "information packet" to send to the genetics department, but I am struggling with how to put it together - I don't want it to end up in their thrashcan! I am going to include my name, email and phone number in case someone wants first hand knowledge instead of the "textbook" description that we got. And I think I will include a few copies of "Gifts" also. I will let you know how it goes and if you have any advice I would greatly appreciate it.
ReplyDeleteLacey, I think people should be informed from PARENTS that know...not docs that are way behind the times, my sister found out at her 20 week ultrasound that- "it's a baby girl" "she has CDH (congenital diaphragmatic hernia)" "would you like to terminate the pregnancy" NO JOKE IN THAT ORDER!!! We were also told at about 30 weeks that our daughter had a "high risk" of being born with Downs...actually they didn't even say that until I sat with the genetic counselor..I was actually afraid UNTIL they said Downs (then I was relieved..Downs was cool with me!!)We declined anything obtrusive (she was born without Downs but with a kidney problem that corrected itself)...CAN'T imagine someone being given the option to terminate!!!! SEND THEM SO REAL INFO! You go girl:)
ReplyDeleteLacey, I am less than an hour away from Boston!!!
ReplyDeleteThere's no way we're not going to meet if you come to Boston!
And if you get a real tree this early the best ones are the ones you cut fresh. The ones from the stands don't seem to last as long. What really helps us is we put our tree in the sun room. There is a heater but only when we are out there, the tree stays because it is cooler.
You probably should not get me started on this issue. When Kristen was born in 1986 she had a very old pediatrician and he told us that there was a place for "these kids" I had 3 more children after Kristen and the doc was a bit surprised each time when I declined the testing as the results would make NO difference. Kristen received your present and she has already painted her project. Thank You! She loves to get mail!
ReplyDeleteI think your idea is a great one! By the way I just love the first pic of Jaxson, it looks like he's about to blow kisses.
ReplyDeleteJonahs Pulmonary doc is Dr. Pfeffer she is in Sandy. I was once upon a time trying to find someone to help me with my child and PCMC was of no help. In fact I didn't even know there was a dr who spacifically worked with lungs...look how far Ive come! (hahaha) A friend of mine who works in the ICU mentioned her name and I called from work one day and I got right in. She saved his life, when PCMC did absolutly nothing! They never ebven gave me a referal...its sickening! (sorry I have some strong feelings about the way things run up there) We have been with her since month 3 of Jonahs life. I didn't care for Chatfield, and knowing that the other pulmonologist was married to her steared me away. But now I have learned that there is a new guy on board so now Primaries has 3 pulmonologist drs. However I am very satisfied with Dr Pfeffer she has has been so good to us.
I think that is a wonderful idea. I had my bloodwork done and it came back saying that Carson had a heart defect. I never once thought about aborting him and then found out through sonograms that the blookwork was a false positive!
ReplyDeleteI'm glad that Jax is starting to get some relief from his illness. I will keep sending good vibes your way.
Hugs