Seeking Information on Fetus Formation During Pregnancy

Updated on February 23, 2009
S.S. asks from Overland Park, KS
14 answers

I am soon to be a first time Grandmother and our baby granddaughter was diagnosied at her 20 weeks sonagram as having developed without her right hand. My son and daughter-in-law and all of us grandparents-to-be were devastated! In the most recent 3-D sonagram at 30 weeks it appears that there might be more of a hand than first thought. The perinatologist told us the arm ended at the wrist, but it now appears that there is something beyond the wrist and maybe a thumb and little finger protrusions with other little nubs. Have any of you experienced issues on a sonagram that did not turn into reality at the time of birth? We have three weeks left and I am getting more frightened and anxious as time draws nearer.

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J.H.

answers from Wichita on

Hi S.,

My friend experienced this with her youngest. The little girls are did not develop much past the elbow. She does have an elbow with about 2 inches with little nubs that were supposed to be fingers.

The way they raised her was right on the nose. This little girl does not let what some call a disformity get in her way! She can do everything that my son can do and will try anything! The kids in school are great, not one tease about the elbow. This girl even plays sports with the other kids! She is very well loved in the community.

So I think it boils down to everyone's attitude. If you think "oh, poor child, you will never be able to do anything." then that is what the child will believe. If you face it head on and say "Yes you have part of a hand but you can still accomplish what you want to" then the child will. I don't think you should be devistated. Millions of people around the world have only one hand and live normal lives.

Best Wishes,

J. H.

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A.S.

answers from St. Louis on

At my 20 week they got panicked by an "enlarged brain ventricle". They even asked if we were considering termination! We researched, and since Downs had been ruled out (we would not have terminated anyway, but foreknowledge of Downs is a good thing to prepare) there was only a 15% chance he would be mentally or physically handicapped, and while it could have been severe, it could also have meant only learning disabilities!
While we were prepared and would have loved our son no matter what, I am happy to say that the agony that ultrasound and the freaked out doctors put us through resulted in a completely healthy, completely normal baby boy. In fact, he's already reading a bit and writing OK (he's 4.5).
And it may happen to your granddaughter, and I will pray for her-- but remember, she is not her hand. It just means a different sized baseball glove. :)
A.

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T.M.

answers from Kansas City on

S.,

I know EXACTLY what you are going through!!!!! Although we
did three sonograms on our daughter (1st born), we were not
expecting her to be born without her left hand. What a shock when she came out! She is exactly as you are discribing in your message. She has a wrist, a very small part of her hand, and very tiny thumb and 4 nubs. It was so
hard to tell the grandparents, especailly since this was their first grandchild, we lived in California, and they lived here in KS. After getting some testing done, mainly to make sure there was not a whole in her heart. The ped. told us she was just fine and could not explain why this had happened. It did take some adjusting for us (the parents) but I am very happy to report the we have a happy, well adjusted, smart, and active 7 year old who is enjoying 1st grade and has TONS of friends. You would never know that she doesn't have a hand. She can do anything any other kid her age can do. We are even learning to tie shoes. She has grown up with her "little hand", as she calls it, and it hasn't stopped her from doing anything. She amazes us everyday. I even forget that she doesn't have a hand most of the time. She is a fabulous young lady!
I would be happy to talk to you or your daughter about this. We found another family with a similar situation that we have now become friends with that has helped us a lot. We ask questions and she is more than willing to help us with whatever issues we may have (which are our (the parents) issues, not my daughters). I know this must be hard for all of you, but plese do not worry, your grandchild will grow up to be a great and capable person.

I will (privately) give you my information if you would like to contact me.

God bless!

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L.B.

answers from St. Louis on

God,
Give me the Serenty to accept the things I cannot change.
The Courage to change the things I can.
And the Wisdom to know the difference.

Sherri,

Thank God for all the things that will be working perfectly on your grandaughter! So many people face challenges that are heartbreaking and then others have losses. Love her and be proud. Grandparents should be the one thing in our life that is TRUE Love, Acceptance and Sweet snacks. :)

God Bless you, your family and your new sweet baby.
L.

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S.V.

answers from St. Louis on

Your grandchild will probably be a much more accepting person than most of us, and truly beautiful for the way God made her. I'm sure she will be a wonderful person.

1 mom found this helpful
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R.H.

answers from St. Louis on

This is slightly different, but will hopefully help ease you. When I was pregnant with my second, they said that they saw shadows over his face and the shadows looked like he had a severe cleft lip and they also saw a mass on his neck, which usually meant Down's Syndrome or some other neuroligical order. So, I was very scared and was a wreck for weeks. My doctor sent me to have an extra blood panel done to check for the neurological problems and he even talked to me about getting an amnio completed but both my husband and I decided that the risk wasn't necessary to take, that we were going to have our son regardless of how he waas born and getting the test results would only make us worry. I did go get the blood panel done, not much risk with those and the blood panel came back normal, but there was still a chance that he could be born with problems. Longer story short, my son was born perfect! No cleft lip, no neurolical problems, just perfect. He is now 18 months old, he is ahead of his peers in everything that he does, he can count to 10 already, he knows A through E in order on his ABC's and he knows a few after that, just not in order. I don't mean to sound like I am bragging, I am trying to set you at ease. Ultrasounds are a great thing most of the time, but sometimes they can be misleading. The doctor explained it to me that the shadows that they were thinking was a cleft lip was his face pushed up against my spine, and in turn of his face in that position caused his neck to look like it had a mass on it. Everything worked out in the end. So, it is very possible that the position your granddaughter is in is causing the shadow effect and she will be born just perfect as well. And even if she is missing part of her hand, she may grow up to be the first woman president! I think that everything will be just fine and that her hand will be right where it is supposed to be, but even if it's not, you won't love her any less and it will only be a handicap if her family allows it to be one. Good luck and God bless you and your family. I hope that everything works out!

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C.M.

answers from Kansas City on

It is absolutely amazing what they can see in the 3D ultrasounds these days but they are not perfect. What do they see in the regular ultrasound where they can see more of the bone formation? Is there some bone structure there that they might be able to operate on after the baby is born to give her a more normal hand? Don't stress too much about it as there might be options for her that you don't know about. If they cannot help her have a more normal hand, she will just learn to compensate without it and will still live a very normal life. I had a friend whose hand was deformed and he could still play the guitar and do just about everything that anyone else could do. Don't treat her like she has a disability and she will not grow up think that she does.

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J.C.

answers from St. Louis on

My cousin has a 1 year old little boy & we went through the same thing. They told us there wasn't a hand (I don't remember if it his right or left)& that the arm went to a "point" at the wrist. He was indeed born with a hand formation. He has a wrist & a "fist" with "nubs". The nubs have even begun to form fingernails. He does NOT have fingers. He uses his little "fist" as if it were a hand. He even uses his "nubs" to claw just as a normal 1 year old would. He is doing wonderfully & has not suffered any severe set backs, yet. He is developing as a normal 1 year old would. They have all agreed to wait until he is 18 ( or at least old enough) to make the decision as to surgery. I hope this helps you a little. Just remember you will love her all that much more!

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E.M.

answers from St. Louis on

S., you can find anything on Google, or ask the perinatologist. You can call him yourself and ask for suggestions.
BUT, I wanted you to know, I grew up with a girl who was born without a fully formed hand. She was a straight A student, got scholarships for college, amazing soccer player, a school principle by 30 and now runs her own business, she's married with 2 children. Also, a good friend of mine married a man who was also born without a fully formed hand (his arm stopped growing below his elbow). He has a great career and 4 children.
I am only writing this to you so you know your grandchild will be perfectly normal, if you treat her that way. The people I mentioned above always said their parents never gave them any special treatment, they had to do chores around the house and learn how to tie their shoes just like everyone else.
Congrats on your first grand-daughter, and be supportive in any way you can.
God Bless.

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H.S.

answers from St. Louis on

Dear Sherri,
This is really out of anyone's hands except God. Whether there is a hand or not will not make any difference in how you love and cherish this baby. Sure there will be some grief, but there will be lots of hope, too.

You as a grandmother will feel proud at how your children handle this first hurdle. Be supportive and positive and you will learn so much. Remember, when you had your kids ultrasound technology was either very new or it wasn't even used....so this is a time to prepare, do research, and hit the ground running when your grandchild is ready to enter this world.

I am in my 5th pregnancy. My 1st ended at 6 weeks and my 2nd had severe genetic problems that made it not able to live past 17 weeks. my first 2 live children have developmental delays that are minor and my 5th pregnancy already has some developmental issues with the umblical cord. So, yes it happens and yes we do adapt and love them. Having been there I know it is not easy, but listen to your kids and be supportive...it will help your grandchild so much.

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P.P.

answers from Topeka on

Children have proved far more adaptable than parents or grandparents. While you are all worrying, she will amaze you with inventive solutions for those actions that we take for granted. Celebrate her birth, love her to pieces and you will soon find that she can wrap you around all of the fingers that she has. She will be a blessing to you all.

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S.D.

answers from Topeka on

I know it must be hard to handle this being your first grandchild and you want everything to be perfect.With the updated sonograms they are almost accurate in the information they provide us, us woman have these sono's so for we and the medical staff can see how baby is growing making sure things are on track and in the event they aren't we have to see a specialist to confirm the diagnoses.I'am 37 weeks now and @ 35 weeks I had to do a sono to see if my baby is growing because I haven't gained any weight with this pregnancy i'm all belly and baby.She appears to be 6lbs and my other 2 kiddos were almost 9lbs at birth so this may be my smallest baby but she still has time to grow.As for a grandma I would try to get as much information about your unborn granddaughter before she is born to prepare yourself and others they may have questions as well.How is the parents to be handling the news.She will be here before to long.God Bless

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J.H.

answers from St. Louis on

Firstly, I am sorry to hear that you're granddaughter will possibly be born with a birth defect, but don't forget that she will be perfect no matter what. :o) Try not to concentrate on her missing limb, it's such a small part of who she is and will be. That all being said we were told that at our 20 week ultrasound our son would be born with a cleft lip. Through out our pregnancy we had many, many ultrasounds, and then eventually several 3-d ultrasounds and two level II ultrasounds. During all of this we were told it was a small cleft on our sons left side, and they could not tell is his palate was effected at all during any of the ultrasounds, but our perintologist said if he HAD to say one way or the other that his palate was not effected. So, when my son was born he actually had two clefts, one of each side of his mouth that no one ever picked up on during all of the tests. His palate thankfully was not effected at all. Neither of my son's cleft's went up to his nose, but his lip was effected on each side. So, that was a surprise for us, but we coudl not have been happier when my son was born. Thinking back now we find it really hard to undertand how no one picked up on the double cleft, but no one did. In the end though it didn't matter, we have a beautiful almost 3 year old boy.
My husband has an Uncle that was born with only half an arm (above his elbow) that had tiny little fingers that stuck out at the end. Over time as he grew his tiny fingers went away and I personally can't tell where they used to be. He never wanted a prostetic and obviously has never missed his arm b/c he has simply never had it.
Anyway, I hope this information is helpful.

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R.M.

answers from Topeka on

S....I to am a first time Grandma...and I can tell you that even if this precious little bundle is born without a hand, she will be PERFECT in your eyes and in your heart!! As someone else has said...she is more than her hand...she is a wonderful little bundle of joy that is going to make your life so much more fun and so much more exciting than you ever though possible.
IF...and it is still an IF....she is born with a deformed hand...she isn't going to know any different....she will learn to do things in a way that accomodates that hand. Have you seen children and adults who are born missing entire limbs and they still lead full active, love and joy filled lives?
My precious 14 month old grandbaby has Funnel Chest...his breast bone is concave instead of convex....at first, I will admit that I panicked...so did his Momma and Papa...but after studying about it online...and finding a doctor that they trusted and was willing to talk with them...we are all doing much better. He is still the precious, funny, bundle of personality that he has always been!!!
Sonograms aren't infallible...they are only as good as the position that the baby is lying in when the picture is taken...and the expertise of the person who is interpreting the sonogram. Don't torment yourself with this ( I Know easier said than done)...keep reminding yourself that what is important is a healthy happy baby...try to remain as positive and upbeat as you can for the Mom...and the Dad.
Enjoy this new baby...your life will never ever be the same!!!
R. Ann

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