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Ryan's story has me sitting here in tears.
- Aug 29, 2009 at 4:10 AM
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- Comments (9) Total Views (343) Everyone can see this journal post.
Your Ryan's story has me sitting here in tears.
RYAN'S JOURNEY (The very second I laid eyes on him I fell madly in love with him)<click to read
When I got there I was told that my AFP was very high and my son had a very high chance at being Down's. I was 27 and had no family history of this. I also had a 5 year old daughter. This was my husband's 1st child however. I was like WHOA. I had never known anyone with DS before.
I told the doctor I wanted an amnio because if he was I needed to prepare myself and my family and more than anyone his sister on how to care for and communicate with a DS child. Please keep in mind I had no experience with special needs.
I never was going to abort but I needed to know for my daughter's sake. We did the amnio and it was positive for DS. I am sure you are aware that amnio results are pretty concrete and leave little to no room for mistaken result. So, we started our processes of classes, reading, preparing and planning for this special boy. Also know that this all happen I was only 24 weeks.
So, the day came for my little man to be born. 2 pushes he was with us. The doctor who had held my hand th entire time just stood there holding my blonde haired, blue eyed angel....he was staring at him with his mouth dropped.
My husband moved so he could see Sterling and started crying...of course, I lost it. So, they handed me my baby and he was a not child with Down syndrome.
Since then I spent the first 3 years of his life looking for answers. Today, I still have no clue. Since that experience I have became so emotionally attached to special needs children. I do pro bono work for parents of special needs children in education. Looking at your son brought back so many memories for me. You are so truly blessed. He is beautiful. Thank you for sharing and for giving me a reminder of why I do what I do.
Written by his mom
Comments:
God works in many ways. If he needed you to do the pro bono work you do and truly understand the children and parents you represent, he thought this was the way to prepare you and point you in that direction.
My son DOES have DS and my tests were negative. I was not upset at all when he was born. To me he was perfect. And why did I get the negative results? In my mind I believe that God was protecting me. I am a horrible worrier and probably would have worried myself sick over it, which of course, wouldn't have been good for my sweet little angel either.
God does what he needs to do for us! Thank you for sharing your story.
God works in many ways. If he needed you to do the pro bono work you do and truly understand the children and parents you represent, he thought this was the way to prepare you and point you in that direction.
I agree w/ jjamon !
I didn't do any testing the first time. I was only 27 and all the older generation had ummm...."midlife (?)" babies , w/ no problems so I wasn't prepared. The doctors strongly persuaded me w/ baby #2 ~ the blood test was positive for trisomy 18 - the amnio was negative- it was a horrible experience my 2nd preganancy was so stressful, but now I realize I had to go through that to change and realize its okay to change you beliefs - no matter how strong they are.
Glad I opened this and thanks for posting this Gloria.
I refused it with my twins. The dr asked me if I wanted and amino and immediately I said NO! God gave me these children for a reason (we were told we couldn't get preggo w/out fertility drugs, well we did!) and even if they both had they are my children and wouldn't change the fact that I love them. The dr then got this huge smile on his face and said I like that, You came in here and you knew exactly what you wanted before I even asked. Most woman as unsure.
I am so honored that Ryan's story has moved you to write about your experience. Your story is so well written and has deeply touched my heart. Your son looks like such a happy young man. You are truly blessed.
When is the Alpha-Fetoprotein test performed?
During the period of 15 to 20 weeks gestation, about halfway through pregnancy, many pregnant women are offered and encouraged to undergo more invasive prenatal testing. One of the tests available is called the AFP or Alpha-Fetoprotein test. The AFP test is a blood test used to screen the baby for certain conditions. The blood taken is that from mom, but a sample can be obtained for testing from amniotic fluid. The AFP test is not a diagnosis. It can only be used to test for the increased likelihood of an abnormality or birth defect.
What is Alpha-Fetoprotein and why is the AFP test done?
Alpha-Fetoprotein is a substance produced by the fetus in utero. AFP stops being produced once the baby is born. The AFP is excreted in the fetal urine which crosses into the mother’s blood stream. This is why AFP can be detected by a blood sample taken from the pregnant mother.
High levels of AFP can indicate an increased chance of the fetus having a neural tube defect such as spina bifida. Another possibility with a high level of AFP can be a low level of amniotic fluid surrounding the fetus. An abnormally low AFP level can indicate an increased risk of Down syndrome.
The AFP is rarely performed alone. AFP is usually part of a test called a “triple screen.” The purpose of the triple screen test is to use the results of all three blood tests to increase the accuracy of the results.
There are practically no risks involved with having the test performed. A simple blood sample is obtained, generally from a vein in the arm. Bruising is normal and women who are taking blood thinners or have a clotting disorder may take longer to stop bleeding from the site.
The accuracy rate of the AFP test is estimated at 80%. Many times women who under go testing are given results that indicate a high risk for birth defects and the baby is born without an abnormality. This is referred to as a “false positive.”
What happens if you have an abnormal AFP test?
When a woman’s results return abnormal, an ultrasound is usually performed. The fetus will then be observed to find an explanation for the abnormal findings. If no answers can be found during an ultrasound exam, a doctor would probably next recommend an amniocentesis.
Many women opt to have the AFP and or triple screen performed so that if there might be a chance of a problem, they can be prepared. If a neural tube defect or other condition is diagnosed, it allows the mother the opportunity to discuss her options.
Many women also opt out of having blood testing performed during pregnancy especially the AFP due to the increased likelihood of a false positive and unnecessary anxiety.
Unless testing is a state requirement, all prenatal tests are a personal choice that you can consent to or refuse.
WITH TEARS IN MY EYES AND A LUMP IN MY THROAT,THANKS FOR CAREING FOR OUR KIDS.MY SON IS 13 AND HAS DS,WE DID ALL THE TEST THEY SAID EVERY THING IS FINE,BUT WHEN HE WAS BORN THEY SAID WE HAVE A PROBLEM,AND BEFORE THEY COULD SAY ANY THING ME AND MY HUBBY SAID HE IS OUR SON AND WE LOVE HIM NO MATTER WHAT. HE IS AND WILL ALLWAYS BE MY GIFT FROM GOD AND I AM VERY GRATEFULL.HE HAS CHANGED MY LIFE AND FILLED IT WITH LOVE. THANKS
When I was pregnant with my second child, I was talk she was High Risk for DS, and that some of the complications I was having could be due to that. I am not going to say I didn't worry, but never once did it cross my mind to abort her. She was born without DS, and she has been a bundle of energy since I conceived her. She lives life so ferociously she makes me smile daily. But when the suggestion first arose that she was High Risk for DS, my OB told me that DS babies were the happiest babies, children and grown ups. And it still makes me smile to see anyone whether is be a child, or grown up who discovers something new and the delight on their face for the experience. I wish you all love, peace and Happiness.
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My daughter had a baby this year. She had been told her baby would have trisimony 2 and had little to no chance of survival upon delivery. She might live a few hours. They wanted to do tons of testing on my daughter while she was pregnant. She refused anymore testing. She did give birth to a baby girl WITHOUT Trisimony 2. They did a blood test as soon as she was born and she does NOT have it. The worry, the aggravation of the whole pregnancy that this baby was not going to survive was agonizing to the whole family. Today she is doing well , four months old and on target for her adjusted age. She was a preemie but survived!