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Post by ourangelalicia on Jun 16, 2004 17:15:06 GMT -5
Interesting Theory, please answer a few questions for me....
I just found this in doing some research for a friend who is due in a week with a baby that may have DS. I found it very interesting and wanted to ask your opinions about it.
"PRENATAL DIAGNOSIS: Is it Down Syndrome? By Amy Moore, UDSF Advocate Editor
Did you realize that when an unborn baby has Down syndrome, his or her placenta and umbilical cord also have Down syndrome? Since Trisomy 21 occurs at conception, and the placenta and umbilical cord are formed from the same cells as the baby, the placenta and umbilical cord also have the extra chromosome. According to Dr. Ken Ward (a.k.a. "Dr. Placenta") at the University of Utah OB Clinic for high risk pregnancies, the ill health of the placenta and umbilical cord can adversely affect the fetus with Down syndrome.
Because of its risks, many parents are unwilling or hesitant to have an amniocentesis to detect Down syndrome. But Dr. Ward says one advantage to performing amniocentesis for a positive diagnosis of Down syndrome is the opportunity to then monitor the health of the placenta and umbilical cord throughout the remainder of the pregnancy. He says often it's not the Down syndrome causing the more severe mental retardation and other problems in children with Down syndrome; rather it is the deteriorating placenta which did not allow enough oxygen to reach the developing fetus."
I find this fascinating, and would love to test out the theory. Since this Dr is in my state and city I could easily get the results of any survey up to him and he could look into it further. If there is truth to this, then closer monitoring during pregnancy even with only a suspicion of DS could make a big difference for our kids.
Questions:
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
Was the heart rate normal during pregnancy and delivery?
What gestation was your baby born at?
Was any comment made about their umbilical cord or placenta at birth or later?
Was your child healthy at birth? Did they need oxygen?
How is your child functioning for a child with DS?
Please don't let this offend you, I'm just curious! This theory makes sense for my daughter, so I'm curious if it's the same for others!
Thank you in advance!
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Post by jennanne on Jun 16, 2004 17:38:28 GMT -5
Questions:
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
Matthew was diagnosed around 21-22 weeks through an amino. There were markers for DS during routine 18 week ultrasound. I was 26 at the time,my first preg.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? I saw my regular obgyn and a prenatal specialist, plenty of ultrasounds
Was the heart rate normal during pregnancy and delivery? I believe so, I don't recall anything out of the ordinary
What gestation was your baby born at? 38-39 weeks
Was any comment made about their umbilical cord or placenta at birth or later? I believe it was intact and normal, nothing was said otherwise
Was your child healthy at birth? Did they need oxygen?
Healthy, apar was overall around 8, did have jaundice. Matthew didn't open his eyes until he was 2 weeks old, didn't cry and had to be fed on a schedule for the first few weeks. Overall in great health- minor vison and hearing problems, low muscle tone.
Matthew is 7 now and just had an IQ test done through the school, he scored a 30. Nonverbal, some sign lang. functions at a 1 1/2 yr old level. Poor fine motor skills but pretty good gross motor skills. Happy little guy, very stubborn and capable of doing more than he wants to.
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Post by meghans_mom on Jun 16, 2004 20:54:26 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
Meghan was diagnosed at about 4 1/2 months into my pregnancy. First thru AFP, then possible markers on an ultrasound. Finally I had an amnio to find out for sure.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
YES! I had NST two to three times a week, and probably almost weekly ultrasounds at the prenatal specialist (not my OB-GYN). Here they checked for cario and GI problems as well as rate of development. I also had other test towards the end to check Meghan's breathing, etc...I forget what they called these tests. I also went for a cardiologist check-up to see if they could find any problems w/ Meghans heart. For some reason they suspected intrauteride growth retardation - I think? She was full term, 'normal' height and weight at birth. [ an aside: Most of these tests were, in my opinion, ordered by the doctor just to save his butt in case of anything happening to MM at birth or in utero (can you say lawsuit?). He was a horrid doctor who would have been happier had I not been his patient, or had MM not been born. One time when I left the office without my twice weekly NST, after being made to wait 3 hrs in the waiting room without having eaten since lunch, the doctor yelled at me and said if "anything happens to this child, it's on your head, not mine"]
Was the heart rate normal during pregnancy and delivery?
Yes, they even hooked MM up to a heart rate monitor intrauterine while I was in labor. If her heart rate ever dropped tremendously I was not made aware of it.
What gestation was your baby born at?
40 wks, on her due date!
Was any comment made about their umbilical cord or placenta at birth or later?
Placenta was normal. The umbilical cord was a 2-vessel cord (which we knew ahead of time from the ultrasounds), instead of a 3 vessel cord, which it normally should be. This is not a definite marker for DS, only what they call a 'soft marker' (ie- it is seen in typical pregnancies, as well)
Was your child healthy at birth? Did they need oxygen?
Perfectly healthy, had some jaundice day 2. No O2 needed.
How is your child functioning for a child with DS?
I think Meghan does fairly well, I think there are kids who do better than her, and kids who need a little more help than she does. I always have difficulty answering a question like this...All I know is that she's accomplished most everything she should have so far, with a few exceptions - but there are ofcourse delays, especially in speech. We haven't had any formal IQ testing done, as MM is only 3 1/2.
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Post by christie on Jun 16, 2004 22:31:58 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all? I had no testing prior BUT I had the feeling from almost the get go that Chris would have DS
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? I had more ultrasounds then I did with Kodi and YES towards the end I fell flat on my tummy and they did a non stress test
Was the heart rate normal during pregnancy and delivery? Yes
What gestation was your baby born at? Full Term, was a scheduled C - Section, Chris was 8 lbs something and 21 " long Same as my Kodi Lee
Was any comment made about their umbilical cord or placenta at birth or later? I was told prior to birth that the placenta was attached and they would have to surgercially (sp?) remove after the birth of Chris.
Was your child healthy at birth? Did they need oxygen? Seem very healthy at brith, NOOOOO oxygen was needed. Bout 2 days later he had blueing due to a whole in his heart
How is your child functioning for a child with DS? Christopher is doing very well, gross motor is where he shines, loves and is good at horse back riding, skiing, shooting hoops, most physical stuff ;D His biggest delay is his speech I don't know his IQ and to be honest its not important to me
CC
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Post by AndAnd on Jun 16, 2004 22:35:21 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
Was the heart rate normal during pregnancy and delivery? Yes
What gestation was your baby born at? 33 weeks
Was any comment made about their umbilical cord or placenta at birth or later?His Umbilical cord was short and the Dr. almost dropped him.
Was your child healthy at birth? Did they need oxygen? He had Duodenal Atresia but otherwise was healthy
How is your child functioning for a child with DS? Andrew is a healthy, happy 6 year old boy who is doing very well. His gross motor skills are very good. He swims very well, can ride a scooter, do a perfect cartwheel etc. My next goal for him is to ride a bike. His fine motor is not as good and he doesn't want to write. He can read a simple sentences like "I see the dog" and has about 40+ sightwords. His speech has improved 100% since he started Kindergarten last year. He can be stubborn but overall we are very pleased with his development.
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Post by AndAnd on Jun 16, 2004 22:40:12 GMT -5
Oops, I missed the first two questions on Andrew.
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?I didn't have any testing done but I was very uncomfortable during the pregnancy and knew I would deliver early which I did.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? Only two ultrasounds at 7 and around 20 weeks can't remember exactly.
Andrea, Andrew's Mom
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Post by Jenifer on Jun 16, 2004 23:28:25 GMT -5
Questions:
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
We had no idea that Joy had Ds until she was born.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
I had extra ultrasounds because my pregnancy was considered high risk (due to several previous miscarriages and signs of pre-eclampsia). Was the heart rate normal during pregnancy and delivery?
What gestation was your baby born at?
She was born at 34 weeks.
Was any comment made about their umbilical cord or placenta at birth or later?
I never heard comments about her cord or placenta. I'm going to request her medical records and if I find anything I'll be sure to report it.
Was your child healthy at birth? Did they need oxygen?
She was a healthy baby despite being six weeks early. She was 6 lb 10 oz, but did need oxygen for about 12 hours. After that she didn't need it again, but did spend 7 weeks in the NICU because of an immature suck/swallow reflex.
How is your child functioning for a child with DS?
She is high functioning. She is about to turn three and is thriving in a class with typical peers. She scored at 79 on a recent IQ test, putting her in the borderline MR range. Her most significant delay is speech, and all around she is about 4-6 months behind for her age.
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Post by justinsmom on Jun 17, 2004 0:27:17 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all? No I had no idea and no testing. Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? I had a non stress test and numerous ultrasounds Was the heart rate normal during pregnancy and delivery? Yes What gestation was your baby born at? 36 1/2 weeks, guess he didn't want to miss his sisters' birthday Was any comment made about their umbilical cord or placenta at birth or later? Justins' umbilical was quite long which was a good thing cause it was around his neck, the placenta was fine also. Was your child healthy at birth? Did they need oxygen Yes he was fine at Birth it was about 6 hours later when problems started to arise and then yes he was on O2 and came home on O2 a month later How is your child functioning for a child with DS? Socially and emotionally his is above, speech of course is our major problem, overall we think he is doing GREAT!!!!!
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Post by donnita on Jun 17, 2004 2:00:58 GMT -5
I remember reading several posts over the past three years on this and other Ds sites about umbilical cords. One question was about cord length (whether shorter cords were a characteristic of Ds) and the another question was whether there were two or three main arteries (I believe) in the cord (whether two arteries was a characteristic).
Answers:
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
No, but my AFP came back positive, changed my odds to 1/80
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
Had a level 2 ultrasound after the positive AFP results, but nothing else extra.
Was the heart rate normal during pregnancy and delivery?
Yes
What gestation was your baby born at?
38 weeks
Was any comment made about their umbilical cord or placenta at birth or later?
No
Was your child healthy at birth? Did they need oxygen?
Yes, APGAR scores of 10. No oxygen needed.
How is your child functioning for a child with DS?
Has good gross motor skills, very good fine motor skills, uses sign language well, does not speak any words, at just over 3 years of age.
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Post by momofrussell on Jun 17, 2004 7:18:07 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
WE HAD THE AFP THAT WAS POSITIVE FOR DS. WE THEN HAD AN ULTRASOUND THAT FOUND THE NUCHAL FOLD AND A HERNIATED UMBILICAL CORD. WE THEN HAD AN AMNIO THAT CONFIRMED TRISOMY 21
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
I HAD ULTRASOUNDS ALMOST MONTHLY TO MONITOR THE NUCHAL FOLD AND THE HERNIATED UMBILICAL CORD. I HAD A STRESS TEST AT THE END OF MY PREGNANCY. OTHER THAN THAT, IT WAS TREATED AS A NORMAL PREGNANCY.
Was the heart rate normal during pregnancy and delivery?
NOT DURING DELIVERY. MY EPIDURAL GAVE ME REALLY LOW BLOOD PRESSURE AND I EVENTUALLY FLAT LINED. RUSSELL'S HEART RATE WASN'T GOOD AFTER. WE WERE TOLD I MIGHT HAVE TO HAVE A C-SECTION IF THINGS DIDN'T TURN AROUND. THEY TOOK IT A BIT SLOWLY AND THEY DID... HAD HIM girl thingyLLY
What gestation was your baby born at?
40 WEEKS ON HIS DUE DATE
Was any comment made about their umbilical cord or placenta at birth or later?
YES. THEY SAID IT WAS A TWO ARTERY CORD AND NOT THE NORMAL 3 ARTERY. DON'T REMEMBER IF IT WAS SHORTER THOUGH. THEY DID A BIOPSY BUT NEVER KNEW THE RESULTS.
Was your child healthy at birth? Did they need oxygen?
RUSSELL WAS IN ICU FOR 2 WEEKS. RUSSELL HAD VERY LOW PLATELETS AT BIRTH THAT REQUIRED PLATELET TRANSFUSIONS THAT DIDN'T TAKE. I EVENTUALLY HAD TO GIVE HIM MY PLATELETS AND THAT TOOK. HE ALSO WAS BORN WITH BILATERAL CONGENITAL CATARACTS. HE WAS SLIGHTLY JAUNDICED ALSO. HIS SATS WERE LOW, IN THE 80'S. WHEN HIS PLATELET COUNT WAS STAYING WHERE IT NEEDED HIS SATS WERE STILL A BIT LOW, IN THE LOW 90'S (they wanted them in the high 90's) BUT SENT HIM HOME ANYWAY. NO EXTRA OXYGEN WAS NEEDED AT HOME THOUGH. THE CATARACTS WERE REMOVED SHORTLY AFTER BIRTH AND THE SATS WERE LOW THEN TOO.
How is your child functioning for a child with DS?
DUE TO RUSSELL'S LACK OF VISION FOR ALMOST 4 YRS, RUSSELL IS DELAYED LOTS MORE THAN MOST OF THE KIDS HIS AGE AND 1/2 HIS AGE. RUSSELL IS NOW 6 AND FUNCTIONS AT A 12 MONTH LEVEL WITH PEAKS UP TO 18 MONTHS AND SPEECH & COMMUNICATION DIPPING LOW TO 6 MONTHS BECAUSE RUSSELL DOES NOT SPEAK AT ALL AND COMMUNICATION IS JUST PULLING MY HAND, VERY PRIMITAVE. HE WAS DX'D W/AUTISM ALSO.
****
A.
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Post by ashleysmom on Jun 17, 2004 7:46:57 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
Was the heart rate normal during pregnancy and delivery? NOT SURE
What gestation was your baby born at? 38 WEEKS 6 POUNDS 11 OZ.
Was any comment made about their umbilical cord or placenta at birth or later? YES, IT WAS VERY SHORT AND WOULD NOT DETACH
Was your child healthy at birth? Did they need oxygen? YES VERY CAME HOME 2 DAYS LATER APGARS 9 9
How is your child functioning for a child with DS? I THINK HIGH SHE IS WALKING AT 17 MONTHS. SAYS 4-5 WORDS AND SIGNS
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Post by AnnieC on Jun 17, 2004 11:13:05 GMT -5
Very interesting theory, I think it makes a lot of sense
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all? there were some indicators, but nothing confirmed.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? yes, late ultrasound, didn't pick up any markers though
Was the heart rate normal during pregnancy and delivery?on the low side
What gestation was your baby born at? 40 weeks, on her due date!
Was any comment made about their umbilical cord or placenta at birth or later? not at birth, but the doctors at children's hospital had some questions....Raven had an MRI done & it showed slight hypoxia, he explained that this was probably due to chronic low oxygen levels during my pregnancy
Was your child healthy at birth? Did they need oxygen? yes, needed rescusitated. APGARS---3, 5
How is your child functioning for a child with DS very low tone, dual dx: DS & PDD (autistic spectrum)....not sure if delays are due to DS or the autism.
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Post by jeannette on Jun 17, 2004 11:56:18 GMT -5
Interesting and I agree that it does make sence Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all? We had no idea. Both me and hubby were almost 36 at birth. Did not take amio but afp and level two ultrs. indicated that she was a healthy baby girl. Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect? No, just had baby monitored for about 20/25min, heart rate remain good. Dr appt's were always good, no alarm of anything what so ever. Was the heart rate normal during pregnancy and delivery? Normal thoughout pregnancy but during delivery her heart rate dropped, I had oxygen mask so baby could breath some. What gestation was your baby born at? 40 wks 6lbs 7oz Was any comment made about their umbilical cord or placenta at birth or later? At deliv, indicated that it was short and stated although uncommon, it does happen. Still no indication that she had DS. She looked like a healthy baby. Was your child healthy at birth? Did they need oxygen? Took awhile to recessitate her, then indicated they was taking her to icu for precaution. 15 min later we were hit with two big blows. She was very sick, had pulmonary hypertention in the lungs (thick maconiun aspiration) Had to be put on max support and that she had features of ds. Was in icu for two wks and finally started to show progress. Overall hospital stay was 1 1/2 months(the longest month of my life) How is your child functioning for a child with DS? Fairly well. MeKyah is now 7 months and her Pediatrician says she seems to be high functioning. She says "da da" constantly and babbles a lot. Muscle tone is good, can stand on legs a good while and is tummy crawling. She doesn't go far but she be moving those legs and lifts up on her hands. She, however can not sit without assistance(sits in lap really good as if she can sit unassisted) and can not roll back to front but continues to try to do these things. Her Ped says she still feels her muscle tone is much better than the norm. All of her appts has been good. No problems with her heart or lungs. Past hearing and eye exams. She has not been sick since birth other than some nasal congestion.
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Post by momofjordan on Jun 17, 2004 14:58:01 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
We did not know that Jordan had down syndrome until he was born. Both the ultrasound and AFP test were normal.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
At week 35 I started to measure "Small" So right before I was 38 weeks I was sent in for an ultrasound to measure the amniotic fluid... I had ALMOST NONE left. So we scheduled an enduction for that weekend. It ended up being a c-section birth.
Was the heart rate normal during pregnancy and delivery?
During the pregnancy the heart rate was fine. When I started measuring small he gave me a non stress test (i was starting to have small contractions) and every once in awhile during a contraction Jordan's heart rate would drop. Then was checked into the hospital for enduction they put me on the monitor and he was still doing the same thing with the heart rate so we desided on a c-section.
What gestation was your baby born at?
38 weeks
Was any comment made about their umbilical cord or placenta at birth or later?
My OB said that the placenta was small.
Was your child healthy at birth? Did they need oxygen?
Jordan needed oxygen for a few hours but he never had full 100% just a little help. He had really thick blood and he had some blood sugar issues and low platelets but other than that he was what they call a feeder grower. He was only 5 pounds 11 ounces.
How is your child functioning for a child with DS?
Jordan is going to be 2 in a few days and he is doing well. He is not walking yet but does pull up to stand and walk along furniture and walk if you are holding his hands. He has always scored really high on the congnitive tests that he has been given. He sat up at an early age but crawling took him awhile as is walking. He signs alot and talks some. Ma Ma, Da Da, dog things like that. He is SUPER tall for a child with down syndrome he is like 105th percentile on the hight chart and like 90th for weight.
On another note. My sister is a NICU nurse and I was telling her about this and she was like "that makes total sense" I hope that this research goes well.
Rene and Jordan
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Post by updowns on Jun 17, 2004 15:55:32 GMT -5
Did you know prenatally that your child had DS? Or did you suspect? Or have no idea at all?
We didn't know but my OB became concerned at about 32 weeks as baby was small so had quite a few tests but they didn't reveal anything.
Were you monitored beyond the regular, check ups...did you have anything extra such as Non stress tests, late ultrasounds, ect?
Extra ultrasounds, foetal assessments, urine test (can't remember what it was called) but I had to collect urine for 24 hours.
Was the heart rate normal during pregnancy and delivery?
Normal during pregnancy but dropped during delivery.
What gestation was your baby born at?
38 weeks - 5lb 12oz
Was any comment made about their umbilical cord or placenta at birth or later?
NO
Was your child healthy at birth? Did they need oxygen?
Sarah didn't need oxygen but was in Special Care Unit for 10 days due to feeding issues, jaundice etc.
How is your child functioning for a child with DS?
Average I would say. Speech is Sarah's biggest delay.
Thanks for posting this, it is very interesting.
Stella
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