Anyone Had A Baby W Limb Anomalies

10 Replies
ChrissyJ - April 24

If anyone has been thru this please help.I had my son afew wks back and he didn't make it.Has anyone went on to have another normal pregnancy?

 

skn331 - April 24

I cant realte to you, Chrissy, but I am so sorry for your loss. What was the problem with your son? Have they told you it was genetic? I will pray for your family.

 

ChrissyJ - April 25

Thanks skn331.He was born when I was 5 months and he had many problems.He only had his upper arm on one side and no hand on the other.His legs weren't formed right either.I am waiting to hear back from the doctors but so far they are not sure why it happend.This has been so hard for me and my family.I don't know if I should try to get prenant again or not.I feel so sad and empty inside.If I didn't have my 8yr old son I don't know what I would do.

 

HannahBaby - April 25

This happened to a woman that i worked with, her baby was born at 8 months and didnt make it, she never found out what it was. She later had a miscarriage at 5 months, but that baby was perfect they said she had an incompetent cervix. They said that the miscarriage had nothing to do with the first pregnancy. i am so sorry and wish you all the best in the future

 

skn331 - April 26

Chrissy, have you heard anything from the doctors yet? Have they been able to figure out what was wrong with your son? Had you had a previous u/s that showed the anomillies or was this a complete surprise? I hope you are doing ok.

 

ChrissyJ - April 26

Thanks HannaBaby.They said I prob. wouldn't get any news until may22.I had 2 previous u/s,one at 9wks and one at 16 wks and they said everything was fine then.I think they u/s tech seen something at 16wks but just didn't tell me.Looking back he was acting kind of odd,he even said I would hate to have to tell a woman that something was wrong w/ their baby.I had one prev miscarriage about 2 1/2 yrs ago but that was at 7wks.I don't know what to think,I did everything I was supposed to do during my pregnancy.When I had my son 11/97 i had a normal pregnancy.I was soo happy about this pregnancy,I have to keep telling myself that my baby boy knows how much I love him.Hopefully i'll see him again someday.

 

lindsay - April 26

hi ChrissyJ... first , i am so sorry for your loss. i don't know how i would be able to go on if i lost a child. my son will be 4 on may 19th... he was born without a right hand and his radius and ulna are fused at the elbow. i am currently 34 weeks pregnant w/ a little girl, and i have what is called a circ_mvallate placenta, so i am closely monitered for any growth retardation or other signs of fetal distress. when my placental abnormality was first discovered, around 18 weeks, i saw a specialist and had a level 2 ultrasound. before the u/s, i had to meet w/ a genetics counseler(not expected) and was basically grilled about my son's condition and family history. it was scary because i thought i was just there to get a u/s because my placenta had an "accesory", so i began to get very nervous about things. long story short (well, shorter) i t was explained to me that the limb abnormality could in no way be a result from an amniotic band as several times deduced as1of 2 possible reasons for the absence, because there is no way a band would cause radial bone fusion. (the other possilbilty:just a fluke.) i was then told of a defect known as radial ray syndrome, which is a radial defect with with bone fusion is consitent with a heart defect. WHAT??? why had this never been told to me, of all the specialists i've seen? well, upon doing my own research, radial ray is not completely accurate, as this is actually a renal occular radial defect , and holt-oram syndrome is the heart-hand defect syndrome. so i am requesting at my son's 4 year appointment that a ekg be ordered, just to be sure. he has never exibited any heart problems and i trust his ped so much, he's great, but i have to be sure. the thing that really bothers me is that through all this research, this syndrome doesn't always present itself in infancy or childhood... the heart defect may not manifest itself until the 3rd or 4th decade of one's life, of which then it gets progressively worse. so that freaks me out, but all in all , my son is great, he does terrific and amazes me daily... there is nothing he has not been able to do or figure out how to do through a little modification. now, as far as my daughter, she has been looked at SO many times, and at least through all the ultrasounds, she does not present ANY sort of anomalies. she is actually doing very well, packing on the ounces and such... so although i can not look at her outside my womb yet and tell you she is fine, it appears that she has nothing wrong w/ her at all. from what you have described of your precious baby, i'm sure that my son's abnormality and his are very different, and i pray you are able to get some answers so that perhaps you may be able to heal w/ a little closure. i just wanted to tell you that this preganancy is "normal" , well, the baby is "normal", the preganancy is not, but i a__sure you that my placental problem has NO relation to what happened to my son; that was why i was interogated so intently, to be sure that it wasn't. i'm sure you have a long road ahead of you, and you'll be in my prayers. also, in my research, i can across a lot of other defects and syndromes that had limb abnormalties a__sociated many other internal defects.. i know that doesn't make things any better , but maybe you can get a clear answer, at least to know if something could be genetic or not. is it possible that the anomalies were not connected to his death, and he was too premature to thrive? i'm here if you want to talk to someone...

 

ChrissyJ - April 27

Thanks lindsay.It's nice to hear from all of you.I have been doing alittle research myself but nothing that I found sounds the same as my son.It's so hard because I question everything I did while I was pregnant.I know it prob wasn't anything I did but I just feel so guilty.He was too premature to live,he was so tiny.I'll keep you and your family in my prayers.I bet your son is excited about becoming a big brother!I hope everything goes well for you and you have wonderful delivery.Did they tell you about your son when you where pregnant?

 

lindsay - April 27

ChrissyJ... i know what you mean about questioning yourself ... i have done the same but deep down i know that nothing i did or didn't do caused the way my son was born... sadly, these things happen. and i know it is the same for you... i'm guessing from you saying that did everything you were supposed to do that you didn't smoke, drink, do drugs, ate right, took your vitamins, etc... yeah, me too... so it is so hard to imagine that this sort of thing could actually happen to responsible mothers like us , right? i do get sad sometimes when i think about it, because i do still wonder from time to time why i was "defective" in producing a completely healthy and "normal" baby... and i was crushed to find out about my placenta... i just thought, what the hell is wrong with me??? so your thoughts are normal, but completely unwarranted... this was not your fault, and i hope that you don't blame yourself. have you ever heard of a guy names kyle manard? he was born as a quadrupal congenital amputee... both arms and legs only stubs... i don't even think he has limbs to his elbow and knee joints... i only mention this because he is so amazing, i've read his book called "no excuses" and am so inspired by him for my son.... he played football while young, but went on to be a star wrestler!!! and the man can type fastewr than me w/ only 2 stubs as "arms"... but he is healthy as a horse... so it is possible for these anomalies to just "happen" almost for no reason... so w/ your son maybe it was just a case of the right signals not recieved at the right time in development... i know that makes nothing better, but i really hope that is the case w/ my son and he doesn't have an undiagnosed syndrome...and to answer your question, yes, i found out at 32 weeks about his hand. it was missed at my 16 or 18 week u/s and i wouldn't have even had another u/s but at my 32 week checkup, i quess i was measuring really huge! cause my doc thought maybe my due date was wrong, so i had the u/s and it was discovered, and i was sent to a specialist and it was confirmed... he was 9lb 4 oz when born, and i believe to this day that his size was a blessing and God not giving me more than i could handle by letting me begin to prepare for this so many weeks before his arrival... amybe i would have just fallen apart to find out when he was delivered and maybe i wouldn't be able to take care of him... that's what i think anywyas... but you know, i didn't even see it when he was born... all i saw was my beautiful perfect baby boy! and yes, he is SOOOO excited to be a big brother :) how is your 8 yr old son doing... i'm sure he is heartbroken and confused... again, your family is in my prayers and i am here if you want to talk... the great thing about these forums is you can say whatever you need to say that isn't always so easy because you never have to face anyone here, yet it is such an great support system... ther is nothing like mothers for mothers...

 

ChrissyJ - May 2

Thanks so much for being so nice.I told my husband about you and your family.I know this might sound silly but you have given me hope.You must be so proud of your son and everything he does.My son was sad and he doesn't understand what is going on.When I had my mc at 7wks he was so upset.Thats why i waited to tell him w/ this pregnancy.I didn't tell him until I was about 13wks.He would read to my tummy and told me how he was going to help me w/ the baby.Now every night when he says his prayers he talks to his little brother.I even thought of having my tubes tied because I was so scared of having to go thru this again.My son told me you have to try again!I am waiting to hear from the doctors but it is taking forever.I want to try again as soon as possible but I am not sure how long I should wait.

 

lindsay - May 2

that's right! you listen to your son!! because i also forgot to tell you that kyle manards parents went on to have 3 completly "normal" healthy girls! i hope you get some news soon... let me know when you do. i'll keep you posted about my son, he'll have an appt. in a couple of weeks... hang in there, you're still in my prayers!

 

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